Inventory of Rheumatoid Disease: One Patient’s Experience | Rheumatoid Arthritis Warrior

Inventory of Rheumatoid Disease: One Patient’s Experience

Ok, this brief awkward moment of my life is called “Inventory”

swollen neckMany with Rheumatoid Disease are more severely affected than I am; others are milder. I am one woman. This is my experience.

You may remember this article on happiness inspired this list, but I put it aside for a few busy months. Now, I’ve come back to it because it seems valuable to present a more complete picture of one actual disease experience, so far. We’re definitely not all the same.

Finally writing this all down for the first time in 7 years, it doesn’t seem very bad. The worst part for me is how many of these problems occur every day, and there are NO days when joints, eyes, etc. are normal.

Have you ever made a list? I’m interested to see your stories!

Neck (cervical spine) – Years prior to diagnosis, I saw a neurologist for neck problems after two years of shooting pain down my arm. He obtained abnormal EMG results of “unknown cause.” I’ve been unable to look over my right shoulder for years, and recently reduced range of motion toward the left. If I look upward, I support my neck with my hands to stabilize it. When the neck joints are not swollen, bones move around producing clicking, popping sounds. The popping movement is noticeable 100 x per day and can be triggered by swallowing or slight head movement. It’s often loud enough that others in the room hear it. When the joints are inflamed there is visible swelling along the sides of the cervical spine. This leads to shooting arm pain, hand numbness, or severe headache, depending on which joint is inflamed. Multiple times, I’ve undergone radio frequency ablation, steroid injections, and epidurals. I’ve described my spine issues in more detail here.

Feet – Dramatic swelling, originally diagnosed as sesamoiditis, appeared overnight; swelling created 2 bunions; and 2 Tailor’s bunions. Prior to diagnosis, podiatrist stated that “splay” of middle toes signaled RA. Painful sensation of rocks under skin when walking. Swelling later decreased and bunions diminished. Pain and swelling later developed in mid-foot joints. Year three, tendons in right toes developed a constant pulling sensation as if too-tight socks are worn; eventually created bent mild hammertoe appearance in right middle toes; wearing shoes can temporarily “re-flatten” the toes. Cramping of both feet and toes. Movement of toes is severely limited compared to before RA diagnosis. Very difficult to walk in closed shoes; have purchased 3 pairs of pricey wide athletic shoes that cannot be tolerated. Shoes are painful if joints are touched; most shoes rub outside joints, which protrude. Plantar fasciitis and bone spurs over 30 years. Frequent numbness.

swollen versus bony feet Rheumatoid Disease

Knees – The first couple of years they never swelled, but they were stiff with frequent stabbing icepick pains. After 3 years, developed swollen lumps on the back of each knee. Eventually I took photos and showed one to Dr. Smart, who called it “Baker’s cysts” and added photo to medical chart. Swelling in the front of the knees is occasional and does not always correlate with pain or stiffness. After the first year of being swollen, the Baker’s cysts began to ache, and they hurt all the time now. My knees are often difficult to straighten. Once after a four-hour flight, they did not straighten for a few months. The Baker’s cysts have been present and often swollen for over three years and have never been examined by a doctor. I do point out that my knees are swollen and stiff and ask to have them examined. (I hope to find an orthopedist who uses ultrasound to extract fluid, but I realize it may return.)

Fever – Since the disease became full-blown about 7 years ago, I get a fever most days of about 2 degrees. It lasts a few hours and returns to 98.6. I own 4 digital thermometers.

Vocal cords (larynx) – Early in the progression, lost my voice completely for days at a time with no virus or cold symptoms. I had no idea my vocal cord problems were related to my Rheumatoid disease so at first, I didn’t complain to the doctor. There were so many baffling events that year and when you can’t feed your baby or wash your own hair, that takes precedence. Later, I read as much research as I could find about the Cricoarytenoid joints and RA. According to autopsy statistics, CA joints are commonly affected. A couple of years later, I began to have episodes when I could not breathe. It seemed like I was being choked and I struggled for air for up to a minute. It was terrifying for my family and me. Eventually, I learned it was connected to the vocal cord immobilization. The past couple of years, I have frequent hoarseness, but only occasional breathing problems.

Jaw joints – The jaw joints “flare” similarly to the shoulders. Some mornings, the jaw joints will be too stiff to open and one side or both will be very painful. Each time, I try to gently force the joint to move by forcing first a fingernail and later a finger between my teeth. With ibuprofen and my forced range of motion “therapy” I can eventually open enough to eat. Each episode can last hours or days. If I walk a lot, causing the inflammation to intensify, the jaw joints begin to hurt (along with all other joints).

swollen fingers Rheumatoid DiseaseHands – Every joint in the hands is affected. I remember 7 years ago when it spread methodically to each joint, perfectly symmetrically. One day, the joint would stiffen and make a loud snap all day. Then, a day or so later, it would be tight and very painful. Except for being larger, hands look similar to when I was diagnosed, with slight deformity. My wedding ring got tighter and tighter (in spite of weight loss) until it was swollen around it and I had to have it cut off. The indentation remained for three years and is still faintly visible. I used to often say, “My hands aren’t affected much” – I still say it; however, whenever I washed my hands, I sighed involuntarily at the relief from the warm water. One finger is worse than the others. I received steroid injections in the DIP and PIP joints of that finger. At one point it was swollen for 3 yrs and did not bend much. It still swells occasionally, but I can now bend it over halfway. If I drive or use my hands for any task, they become very painful and stiff. They are very weak, compared to before the disease. They only swell occasionally, and usually appear normal, except for larger bones. I’ve always had loose skin on knuckles and palms, so when they swell the skin is tight. Since doctors told me they don’t look swollen, I take photos of both swollen and non-swollen to show the difference. When finger joints swell, a blue vein protrudes along the top. My DIP joints have always been worse than the MCP joints. Numbness in both hands. Cramping when I try to force them to do things, such as cut food or style hair. The joint at base of thumb comes loose so I drop things.

Elbows – Pretty simple. The same snapping noises as my fingers when they had their onset that first year. Occasional swelling, on the back. The joint is larger, weak, and sore if used. Occasional icepick pain. I had one pea-sized nodule on left elbow for 1 year, but it left during Enbrel (which I was allergic to, so go figure).

Ankles – Same as elbows, but no nodule. Occasional swelling, mostly on the right leg. The left ankle has limited range of motion and frequently snaps loudly.

Sternum / rib / clavicle joints – There is pain along the sternum on both the left and right sides. Always tender if touched. As with the vocal cords, I had no idea what was happening to me and did not complain to a doctor. Later, my 2nd rheumatologist used to examine it and say it was typically inflamed. That was one of the things that earned the nickname “Dr. Smart,” for diagnosing various joints based on examination. They get very inflamed from activity such as shopping or folding a lot of laundry.

Skin – After my feet, shoulders, and knees were involved, rashes began: first inside the left elbow, bright red; then spreading up and down to cover the whole side of the arm. After about 3 days, it hardened and flaked off. It stung. A few days later it began again, following the same pattern, but on both arms. This continued several months until I was established on methotrexate. During those same months, my face and upper torso turned bright red and hot a few times each day. The redness lasted about an hour. I have olive-toned skin and have never “blushed.” Edema. Deep impressions.

swollen blood vessel on foot with Rheumatoid DiseaseBlood vessels – Livedo reticularis, permanent for two years on left leg, and periodically in other locations. Frequent bleeding under skin on hands or feet with painful “bruising” with no injury or impact. Blood vessels swell. Black circles on toenails.

Eyes – I ignored eye dryness, not recognizing symptoms, again, because more urgent or painful issues took precedence. I was squinting and using sunglasses constantly, eventually even wearing them indoors in the evening because any amount of light was very uncomfortable. I finally saw an ophthalmologist. I’ve been treated for Sjögren’s for 5 years, including tear duct plugs and Restasis. My near and distance vision has declined quickly and my eyes are often sore or itchy.

Mouth – Dry. Related to the Sjögren’s, lips are constantly dry and peeling.

Hips – Like feet and shoulders, these have symptoms that go back far before diagnosis. After my first pregnancy, my hips would “go out,” one at a time and I would stumble as it came on. After 3 days, the flare of pain and weakness would subside, and hips seemed normal. This occurred after the births of each of my five children. Dr. Smart diagnosed bursitis in hips related to RA. Continue to experience occasional weakness and frequent pain.

SI joints – Tenderness, stiffness, pain. Usually “flare” symmetrically, making it difficult or impossible to walk. Accompanied by visible swelling. Prednisone is the only thing that helps.

swollen wrist Rheumatoid DiseaseWrists – Snapping noises at onset same as fingers, elbows, and ankles. Usually appear normal. Have photographed when swollen. Dr. Smart diagnosed bogginess and effusion when they appeared normal to me. Usually have full range of motion when not inflamed. Always tender and frequent icepick pain. The first 3 years, I could not hold lightweight iron or soap bottle, but sometimes I now can for a short time. Since onset I can no longer bear weight, as with push-ups. Occasional popping sounds. Often, as I try to use my wrists, the hand and arm pull apart painfully.

Cardiovascular – Blood pressure is normally low; however I experience episodes of high blood pressure, usually lasting under one hour. Sometimes irregular heartbeat, and other times, feeling like my heart is in my throat. Shortness of breath.

Back – Degenerative disc disease (autoimmune). Ruptured disc. Muscle spasms. Episodes of numbness in feet or hands, lasting 30 minutes to 2 days.

Shoulders – After the feet, the shoulders were the first with severe flare, and like the feet, they had flared mildly for over 25 years. I was never sure which shoulder had the “unknown injury” because the flare always alternated sides. Soon after the toe joints “blew up” red, swollen, and twisted, I awoke at 2 a.m. with one shoulder feeling like it was shot with an arrow or a bullet. The pain took my breath away; I could only compare it to labor pain. Exactly one hour later, the other shoulder was the same. For several months, they were extremely sore and stiff. The shoulders never returned to normal, but only occasionally are as bad as that first night – so that I can’t move my arm even an inch away from my body, even pulling on it. I noticed a progression in the shoulders when I lie down: First year, when I lay on the left side, it hurt. The next year, if I lay on the shoulder it would hurt and then after a few seconds, my body would visibly drop about an inch as my shoulder slipped out of place. It was usually too painful and I shifted back onto my back. The next year, when I lay on the left side, the “drop” happened instantly. Eventually, there was no drop, but lying directly on the shoulder, it feels like my arm is ripping off. Left is slightly worse and was injected with steroids.

Constitutional symptoms – Loss of appetite, fever, weight loss, fatigue, muscle loss.

Recommended reading

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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48 thoughts on “Inventory of Rheumatoid Disease: One Patient’s Experience

  • August 13, 2013 at 9:44 am
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    What a comprehensive inventory, which includes some things of course which doctors will tell us is not RA. I was interested in your sternum pain because I have never seen it described but my sternum feels like that too. Along the sides it is very tender when I touch it. All anyone ever says is “So don’t touch it then” which is hardly helpful.

    I feel a bit better with my methotrexate dosage upped these past few weeks but I can’t get to what the Dr ordered which is the maximum dose of 25 mg. I inject it so it is not as bad as pills and yet it makes gives me those familiar gastro symptoms for about 3 days. I’ve made it up to around 21 mg but it’s difficult.

    Isn’t it strange how reading your inventory I bet we all mentally compare each joint. It’s amazing you get so much done Kelly.
    For a while I was hypersensitive to car exhaust one summer and was getting a little panicky about breathing on my way to work and back.

    Do you ever get a pain across your abdomen just where your bra sits? I can’t think of any joint reason for that one. You sound like a big Rice Krispie 🙁 🙂

    Reply
    • August 20, 2013 at 4:05 pm
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      Hey Annette, I don’t know much about fibromyalgia but that may be your sternum and bra line pain. Sides of my arms/legs hurt to touch – so yes, erika don’t touch. But sometimes you gotta put moisturizer or scratch or whatever b/c of the soreness you just rub it and then that hurts. Hope you find recovery, remission and peace. erika

      Reply
    • August 21, 2013 at 9:23 am
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      I always love to talk with you Annette. In comparing, I try hard not to since I know it ultimately doesn’t matter & we are so different. As a “newer” patient, I try *very* hard to not compare with my closest friend who has RA – we met on the blog but only live an hour apart. Someone who has had several joint replacements – comparing would be a disaster – my condition is still what it is even if I “look” less like it should matter. That’s the trap some docs fall into.

      The mtx – I injected 25 for several years. And yes, eventually, it gave me gastro sx that were pretty bad. I think I built up a kind of response to it – there was no medical explanation because I don’t have a decent rheum doc right now (dr tylenol). Only idea I have for you might be to split it up like half on tuesday and half on saturday. That’s in the literature, but I haven’t tried it. I saw a presentation at ACR where they showed it even decreased liver issues.

      I always thought the sternum to rib joints were accepted as RA-related as costochondritis (not a great term since it seems to have different applications – so I just describe the sx specifically & didn’t use a label). And the sternum to clavicle was on a post recently. As I’ve read more than once, “if it *moves* it can be affected by rheumatoid.”

      Reply
  • August 13, 2013 at 10:23 am
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    Hi, Kelly. Thank you or this inventory. I’m considering sharing it with those few friends who are actually interested in knowing more, to foster understanding of all he ways in which this disease affects us. It also makes me realize that many symptoms I had for years before diagnosis and that I’ve always been told and assumed were not RA likely are and were, and it’s been with me for a lot longer than I’m aware. I don’t know how you do everything you do; do you have the software that types what you speak so you don’t need I type with your hands? I wonder if that would help spare your fingers and wrists. I’m finding my wrists and hands very sore from work lately, although there’s no visible swelling…

    Reply
  • August 13, 2013 at 10:28 am
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    Well shall we start at the top and work our way down.
    My Jaw
    I can’t open my mouth as wide as I used to, I can’t chew for long periods of time or it gets sore. During a flare it swells up making eating difficult and the pressure gives me a headache.
    My Neck
    Usually swollen, periodically when I lift my head it cracks and gives me a sharp pain. But I still have good range of motion. I do have to have a kneck supporting pillow or I get cramped up and in too much pain to sleep.
    Shoulders are good… they don’t seem to hurt and I have normal range of motion.
    Elbows
    Very painful during a flare… loss of my range of motion… I can’t straighten them all the way anymore. Which makes the monthly blood tests a little bit harder, it also has shortened my reach which makes doing my own pedicure much more difficult and painful.
    Wrists
    Pain every day flare or not… both wrists have fused… I have almost no range of motion. This has caused me to have a weak grip and I drop things a lot. The ulna bone is out of place… it has shifted to the top of my writs and it sticks out. Many days I wear wrist supports to help with the pain.
    Fingers
    Loss of range of motion in my right hand. I can no longer make a fist, my index finger is bent and enlarged and I can’t straighten it all the way or bend it all the way. I had surgery to fix two broken tendons on my right hand – several years ago… it did work… but because two of my finger tendons are now joined… I can’t move those fingers independently. My fingers are weak. Typing and writing are difficult and time consuming and become painful. I can’t wear my wedding ring or my family ring because my fingers swell.
    My Hips
    Mostly good, they do hurt when I walk for longer periods – like 15-20 minutes… but I believe that is because of my bad knee which gives me poor walking posture.
    Knees
    X-rays show very little cartilage left on left side and bone on bone on the right side. I am supposed to go soon for a knee replacement… just waiting on the surgeon’s call. Almost always painful. I have to be careful not to twist at all when I walk or I get a shooting pain which has almost made me fall. I cannot bend them or straighten them all the way. I don’t sit on the floor, because I can’t get up. I don’t sit on low furniture for the same reason. I don’t go places where I won’t have a suitable place to sit. I can only stay standing in one for 5-10 minutes before the pain is so bad I have to sit down. I use a reaching device to pick things up off of the floor because bending puts too much pressure on my knees.
    Ankles
    The do swell when I have a flare… but not too painful usually.
    Feet
    The bones in my feet sometimes feel like they are separating and breaking and I can barely stand the pain to walk. I have two hammer toes which makes it very hard to buy comfortable shoes. My shoes must not have a heel or I cannot walk in them. I would say, it’s my feet that hurt the most.
    While writing this I realized something… I make little of my pain and my actual limitations. I would start to write “most days”and realize it’s not “most days” it’s everyday.
    I just have learned to cope with the pain I guess… it does still get to me though, sometimes. 🙂

    Reply
    • August 20, 2013 at 4:02 pm
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      Go on girl – get thy knees replaced tout suite! french for very rapid? long time since french classes! Your dis-ease sounds similar to my progression. Knee surgery and therapy is hard work but it is worth it. Yes my knees took a long time to recover fully and still give me some pain/swelling if I do too much or walk too much, but I believe it was worth it and pray they last for at least 20 years.
      Best wishes. Erika

      Reply
  • August 13, 2013 at 10:46 am
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    My inventory:

    Early in onset: Tendon over top of my wrist was inflamed and became deformed, with a noticeable “dip” over the wrist.

    High school: my hands swelled horribly while playing softball.

    Senior year: knees and ankles swelled, pain and popping. Often had a red rash on front of my ankles.

    College: by the end of my freshman year in college, knees and ankles were so inflamed and painful that I cursed the stairs I climbed to my classes, and I could no longer play sports. Began sleeping with an electric mattress pad and heat pad because if my legs got cold, I had difficulty getting out of bed in the morning. Pain often woke me up when my legs “locked up.”

    At age 23, I was finally diagnosed with RA. Treated with plaquenil and celebrex. I was also diagnosed with a bleeding ulcer. My neck began to hurt horribly, but my rheumatologist kept his focus on my hands. My hands were not affected. Yet.

    By age 28, my neck and shoulders were the primary areas with consistent pain and swelling. Could no longer write a full sentence on the dry erase board (I was teachign) without stopping to rest my shoulder. Low grade fever was common. My hands were finally affected. Had to sit during most of my instruction because standing hurt so bad.

    Age 30, found a new rheumy after the first one continued to focus on my hands not my neck and shoulders. He told me that I really had fibromyalgia, not RA. Reality- I was in “remission” and the residual pain was fibromyalgia and RA-induced damage. Prescribed elavil and muscle relaxers. However, could rarely use them as they made me too drowsy to drive.

    Age 33, able to have a child as I was no longer taking plaquenil. Pain increased after I gave birth, but I attributed it to fibromyalgia. My son had a health problem so I rarely slept more than 3 or 4 hours on most nights, which will obviously cause an increase in fibromyalgia symptoms.

    Age 36, sought help from a pain clinic. They did and MRI and evoked potential test. Found all of my cervical spine had damage but C5/C6 was the most significant. Evoked potential also revealed that Several nerves in my left leg and arm had delayed nerve conductivity. Began getting trigger point injections. My new RA still said I had fibromyalgia but finally saw some concerning changes in my hands.

    Age 37, had hysterectomy. My RA symptoms were no longer in remission, had my first episode of SI joint inflammation.

    Age 38, had my first SI joint injection, which was absolutely positive for SI joint abnormalities. I had forgotten what it felt like to be pain free! Wish it lasted longer. Haven’t had another one but I’m really needing it now.

    Age 39 (present). My hips, si joints, cervical spine, and tendon sheaths in my hands are very painful on most days. I have a chronic petechial rash on my arms and chest. My feet swell if I stand very long. Thankfully, my current job isn’t physically taxing. Trying to find a good rheumatologist as I finally have hand symptoms again. It’s possible that I was either misdiagnosed with RA instead of similar autoimmune condition, or if I had late onset JRA but now have a different autoimmune problem. A few days ago, I couldn’t bear walking more than a few feet due to my lower back pain.

    Reply
  • August 13, 2013 at 11:38 am
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    Kelly, this inventory was a great idea and I thought I would participate. I enjoy everyone sharing on this site since this disease has so many different faces of presentation.
    Neck -Crunching sounds, I can’t move my head and listen to something/someone at the same time, the crunching obscures what I am trying to listen to. If I rest my head the pain is OK, but if I am up and about too much in the day with my neck supporting my head alone (I swear sometimes my head must be 100 pounds), then the pain is quite bad. My previous job was all day at a microscope. Can’t do that anymore, the rigid fixed position of your head without any ability to move is unbearable. Still searching for my career plan B…
    Feet -Common swelling of toes and ankles. I too get the splaying of middle toes. I keep them under control the best I can if I keep them up whenever I sit, and I only wear the skechers go-walk shoes. Socks? Can’t do those any more.
    Knees -Swelling is generally never bad in my knees, but they are still quite unstable. I did have frequent bouts of falling, when my knees would just go out from under me without warning. Since moving to Florida and getting exercise in the pool, I am not falling nearly as much as before, but still must walk carefully and be certain that one knee can hold me before I step to another.
    Fever -I have a fever all the time. My Michigan rheumatologist did a full workup to rule out anything else, and finally decided we would just not call it a fever unless it was over 101.4. I have dealt with it by drinking ice water throughout the day and have stopped taking my temperature unless I feel so toxic I think it may be over its ‘new normal.’ Florida rheumatologist has never taken my temperature…
    Vocal cords – the symptoms you describe have never happened to me. They sound terrifying, but thanks Kelly for sharing, because now if something like that happens to me I will recognize it for what it is.
    Jaw – I have had a few flares of lower jaw. They are extremely painful and make it difficult to eat/brush teeth/talk, it is just awful. For me the jaw occurs as flares and is not a constant simmering pain like hands/feet/neck/ankles/wrists.
    Hands – swelling is better than before, but sometimes I think the swelling helps with the pain. When my fingers looked like sausages, I think the swelling compressed the nerves enough to somewhat block the pain. Now my swelling is minimal, still can’t wear a wedding ring, but the pain is about the same. Florida rheumatologist can see cherry red knuckles, but if they are not swollen, then I have ‘no visible inflammation.’ Gee, maybe I’m in remission!
    Sternum/ribs – I have an educated intelligent husband who thinks it shows me love to give me bear hugs. I have tried to explain (obviously without success) how painful that is and how the fact that he continues to do it is at the least insensitive, and from the pain I feel, feels more along the lines of domestic violence to me. Some days I can feel every breath I take in my ribcage. This is one feature I never expected from the RA.
    Eyes – very dry and then I will have episodes of streaming tears. Sometimes hard to open in the morning, since they are so dry. I too have the light sensitivity you mentioned. Got a big pair of those wraparound sunglasses, they help a lot.
    Constitutional symptoms – these for me I feel are worse than the pain. Pain is something I can deal with pretty well, but when you have a fever and fatigue it makes it much harder, especially when you have to deal with the pain day after day – year after year. In my first year of explosive onset RA, I gained about 30 pounds. My activity level plummeted, and the methotrexate made my stomach so upset I was eating a lot of dry-bready things to try to calm it down. I was still working full time then, but could hardly move when I got home. Busy weekends turned into couch weekends. After about a year I got a med cocktail that worked for me as well as I could hope. It is so much better now that what it was back then I hate to complain, but this ‘new normal’ is still sooooooo far from the old normal, even though we look a lot alike from the outside.

    Reply
  • August 13, 2013 at 12:32 pm
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    Yikes Kelly, some of those pictures are nasty!! Lol! Everytime I start to get depressed, I try to remind myself of so far how lucky I am. I can still walk, work, and most days function pretty normally except I am EXHAUSTED! I’ll keep my inventory short, but it includes carpal tunnel in my left hand (last two fingers cannot bend), and trigger finger in my ring finger on my left hand (hopefully someday my boyfriend will find a nice ring to fit it, I think it’s up to a size 10, ha ha!), blurry vision, wrist pain in both hands, upper back and neck stiffness and pain (I couldn’t turn my head without prednisone, that’s where it all started), and some knee and foot pain, although it is better since starting Enbrel. I keep a diary now, and write down everyday how I am feeling, hoping I can get off some of these medications. I think it helps to keep track, we should re-evaluate our symptoms every so often and make sure we are taking the best care of ourselves that we can!

    Reply
  • August 13, 2013 at 12:44 pm
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    My Canadian Doctor has coined a new desease. He calls it RUPUS and l think it just about covers all my problems.

    Reply
    • August 13, 2013 at 6:22 pm
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      I have been diagnosed with RA for about 2 years now, I am not sure I agree though! I wondered where you are located? I am in Calgary, Alberta. I haven’t found many support systems close by or even Canadian groups to join!

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    • August 13, 2013 at 7:40 pm
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      I love it! My rheumy still considers Lupus sometimes but tells me I am the worse RA patient he has. What an honor! My inventory would be similar yet different like everyone else’s. Meds haven’t done much at all except make me sick and extremely exhausted so at this point I’m not sure what to do. But at least, the next time I see him I’ll ask if he thinks it could be Rupus! Thanks.

      Reply
  • August 13, 2013 at 2:42 pm
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    Hey Kelly- I have offered you my best advice and irt appears you do not want to give it a try. Either walk on the dewy morning lawn for a half hour to 45 mminutes ,BAREFOOT, each day or go to Earthing .com and purchase a sheet or foot pad . You will be amazed at its ability to relieve pain, stifness and overall achs. You will sleep like never before and heal. Good Luck. Let me know your results. It has almost cured all of my RA and my wife’s Fibromayalgia after two months!

    Reply
  • August 13, 2013 at 6:49 pm
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    Hi Kelly – I’ll chronicle mine as well…maybe offer some hope to a few folks suffering our there:
    2009 – suddenly lost the ability to put pressure on my right leg/hip, walked with a cane for 3 weeks just to keep it from collapsing under me. Xray showed. “Some arthritis in the hip joint”, but nonfurther investigation by doctors and it got better as quickly and mysteriously as it came on.
    2010 – started with achy, tender feet, some stiffness on both hands, but nothing terrible. Then, woke up one morning to feet, ankles, calves swollen to the point I could not get my legs in pants – first trip to Doctor for testing. The next day, both wrists developed very large lumps of fluid/swelling and doc confirmed blood tests positive for RA.
    Start low dose of MTX, but disease progresses rapidly and by September 2010, my neck was completely immobilized in the typical RA “looking down” position. My jaw had fused shut, making talking and eating difficult. Both shoulder and hip joints with severe bursitis, unable to move my arms away from my body at all. My feet hat gotten to the point where the pain os standing wasn’t bearable, and my knees were both swollen and unable to straighten. My hands were too weak to hold anything or do anything, so i had lost the ability to dress myself, drive a car, get up and down stairs, turn over in bed. Or even pull a light sheet over myself – spent a LOT of very cold nights uncovered and unable to even do this basic act.
    I bottomed out getting carried off a flight by 4 crewmembers, completely frozen and in tremendous pain, transported by wheelchair, carried into the car by a limo driver, who also carried me up the stairs when my then husband refused to assist me because he thought I was looking for attention (no longer my husband).
    Went to new doc in September, prednisone haf me up and walking within DAYS! MTX 30 began to kick in and my joints began to get better. First neck, then hips, then shoulders. Feet and hands improved dramatically, but still tender and one knee remained very swollen (2x the size of the other) and could not straighten. After 18 mos on high doses of steroids and injections, doc finally added Enbrel in 2012. After which, a miraculous “recovery” and, although I was not technically in remission, I was so grateful to be able to walk I trained to run my first 5k (ever!) at age 47.
    2013-today I began to taper down MTX and Enbrel, but was on preds too long and have a cataract in my left eye and really bad vision (was 20/20 in 2009). My voice has changed to an “old lady voice” per my kids, from RA and I have a tendency to choke a lot. The constant overwhelming Fatigue and fever of the first 18 months have become tolerable and intermittent and I have only periodic bouts, where they were once 24/7. My feet are all messed up, with bunions on both sides and gnarled toes, and my hands look like my Mom’s when she was 70, but I consider myself very, very lucky (and in the minority) that I was a) diagnosed early because I “passed” the blood test with the “right” markers and b) found an amazing Rheumy who is totally up on the latest. He says “if a doctor ever tells upu he knows the cause of RA, walk out”! Love him!!

    Reply
  • August 13, 2013 at 8:57 pm
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    Thanks for your inventory, Kelly. It could be mine, as I’ve experienced all those symptoms over the years. Right now I’m not too bad except for hands and feet which nothing seems to help for long. Actually my very first symptom was my feet swelling and burning and very gradually becoming deformed. That was over 30 years ago. It took 25 years for me to be diagnosed with RA, Sjogren’s, Raynaud’s, etc, etc. My hands were last to get involved but they caught up quickly. I’ve had so many steroid shots in various joints I ‘ve surely lost track. Seems like a lot of us have had a similar disease course. Atypical or more common – depends on who you talk to. It’s a tough journey that only another RDer can understand.

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  • August 13, 2013 at 8:57 pm
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    I recently saw former colleagues who all commented on how well I look, that being out on disability agrees with me. HA!! Not that I don’t like being told I look good 🙂 – but if they only knew…
    Overwhelming fatigue always, like the second or third day of the flu. Eyes very dry, frequently red, irritated, multiple episodes episcleritis, recurrent subconjunctival hemmorrhages, bilateral cataract surgeries related to Prednisone. Severe jaw pain and stiffness, can’t ever really eat chewy foods, dental work is a nightmare. Occasional hoarseness, sore throat often on one side only, I think crico inflammation. Front of neck/carotid pain, some kind of inflammatory response. Back of neck occasionally gets almost frozen, can’t turn head. Shoulders not currently a problem, but were one of my first symptoms, with pain as severe as any I have ever had. Pain in sternal area, collarbone, ribs. Recurrent shoulder blade pain, sometimes pleuritic, worse with breathing.
    Frequent uncomfortable heart palpitations (from Prednisone) and labile blood pressure. Two painful compression fractures of my back, also from Prednisone, leading to chronic back pain. Hip pain, sometimes into the groin area, can lock up the joint, making me feel like Tin Woodsman. SI joints suddenly recently painful. Hands and wrists, worse after too much computer use, recent rheumatoid nodules on thumbs and multiple fingers. Elbows, occasional pain after use (too much housework!), recent golf-ball size effusion on one elbow requiring aspiration. Knees chronic, often worse at the back of the knee with Baker’s cysts, but always stiff, pain worse the more I walk and do. Feet with severe plantar fasciitis, achilles tendonitis and pain in toes, like walking on marbles. Tendontitis almost anywhere, like inside of elbow, top outer hands or feet, bursitis hips/thighs. Skin so fragile, bruises and tears like a 90 year old’s, Prednisone again. Skin cancers, from sun of course but maybe also triggered by TNFs. And then the anxiety and life-altering adjustment connected with finally realizing I could no longer work. And the anxiety related to each new med and its potential side effects.
    Thanks for the chance to describe and vent to people who understand that this is an inventory, not just a long list of complaints (although I guess it’s that, too!)

    Reply
  • August 14, 2013 at 1:04 am
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    A lot of that inventory applies to me, except I don’t have the blood vessel issue. Though all symptoms are annoying, one that freaks me out in particular is a “skin” issue. My upper lip will suddenly get hot and itchy. It turns red and swells to the point where I just want to hide my face. Of course it seems to happen at work quite often. Sometimes it happens right between my eyebrows, too. Frustrating.

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  • August 14, 2013 at 9:32 am
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    The orencia infusions i receive at mayo, jax, has reduced most of my symptoms and pain excepting my feet – chronic pain stiffness swelling & difficulty walking. I attribute a lot of that to the osteoarthritic results of early untreated and aggressive ra. What amazes me is how many symptoms you have despite the number of treatments you have undergone. I wonder about your having 5 pregnancies and the hormonal rocking and rolling your body has gone through. I am thinking that deserves some additional attention. Thx for sharing – i will have to review my journey.

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  • August 15, 2013 at 9:55 pm
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    Wow Kelly!
    That inventory sounds like the story of my life! I am in my second year after initial diagnosis and looking back at the pain and surgeries I have had over he past 15 years, I am certain RA was the culprit and went undiagnosed all this time.
    From my hammertoe surgery that was supposed to cure my ” walking on broken glass” feeling (surgery was unsuccessful ) and opted not to get my left foot “fixed”, thank god because the pain in the surgery repaired foot is crippling.
    I just wanted to pass along a therapy that I have been working on for four weeks now wih great success.
    I am unable to work out now (even my bow flex which used to be my saving grace) so my muscles are getting weaker which makes my joints take the strain and flare and swell more often.

    Just purchased an RX8000 muscle stim machine. Kind of like a TENS unit on steroids! Pads are placed on each end of certain muscles and run through a workout cycle. The muscle contracts from electrical stimulation with virtually no strain on the joints!

    Atrophy no more! I am loving this and the increase muscle strenth has has a positive impact on swelling. I still do daily rehab (TENS unit on affected areas, ice compress, stretching, etc) but am so excited that I am getting stronger!

    Figured you want to keep up on things that work so I wanted to share this story with you.
    Keep the faith and if I get strong enough we can arm wrestle for a dose of Humira, OK! 🙂
    Take care,
    Rich S.

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  • August 16, 2013 at 5:41 am
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    Wow Kelly I thought I had it bad with rheumatoid arthritis in my knees and psoriatic arthritis everywhere else. It appears you have arthritis worse than me but I have increased my range of movements and lessened the pain considerably with diet and supplements and the longer I stick with it the better I feel and that has improved my outlook on life.

    You mentioned warm water giving you relief in your hands. Ten years ago I was living in cool damp New Zealand and to lessen the pain I used to have a sauna most days and I found that to be a big help.

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  • August 16, 2013 at 7:47 pm
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    Ok here’s my inventory

    Fingers mostly affects my thumbs. I currently have tendenitis both thumbs but it is mild and not affecting my daily activities. Tendinitis in middle finger on right hand hurts to bend it. I’ve been crocheting lately this finger always acts up when I crochet. Fingers probably swollen don’t really know since they’ve been this way for a long time. I do know that they are so big I can’t wear rings because none of the women’s rings sold are big enough for me.

    Neck hurts to bend or look over shoulder but still able to do those things. Shoulders actually doing a lot better have had tendenitis and impingement in the past but right now the pain is mild and again not affecting daily activities.

    Back this is the big one. I can’t stand at all without pain or walk without pain. I have been diagnosed with moderate stenosis and facet arthritis.

    Hips who know variously diagnosed with bursitis and IT band syndrome. Often can’t tell if the pain upon walking or standing is coming from back or hips, the lower half of me just hurts every where.

    knees sometimes sore sometimes not, never all that bad, again doesn’t affect daily activities.

    Feet pretty good right now since I don’t walk or stand much. I have plantar fascitis and tarsal tunnel syndrome. Tarsal tunnel syndrome acting up a bit in right ankle, probably because of hip and back pain which has created a limp.

    Mouth extremely dry, have been hoarse now for about 4 months. ENT says hoarseness comes from food getting stuck in my throat because of the bad dryness. He says he can see dried up food and mucous all the way down my throat. No matter how much water I drink or humidifiers I use can’t seem to get rid of it.

    Teeth constant cavities, gum disease, lots of crowns, root canals and various other dental procedures.

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  • August 20, 2013 at 3:54 pm
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    I don’t quite know what to say..but everyone has something and we (RA, FBRMLGA, OSTEO -from RA and Lupus and other forms of these autoimmune disasters) get a lot of it.
    I recently completed a history of my RA as I am applying for disability through my state retirement system..heard it’s very difficult to get with RA. We’ll see. I’d take advice from anyone out there with OH PERS..
    Anyway, the history is long and involved like Kelli and many of you..but I think I will complete an inventory too as that helps to see how many systems are affected by this dis-ease.
    I was diagnosed at 28, after about a year of floundering with various joint swells (sausage toes/fingers, hands/feet, knees). I am soon to be 48 YOA on Halloween. So 20 years with RA and now diagnosed with fibromyalgia too, it’s been a journey.
    Joint replacements: dual knees 2012, L hand ring/pinky pip joint – but worthless surgery as these fingers now wobble back and forth at a 90degree angle. Afraid one day I might just bust one off like a lizard tail or something! I doubt it would grow back though :-}
    Next joints to go will be: ankles, wrists, elbows. I’ve had numerous cortisone injections into all of my joints which is great while it lasts for maybe 3wks to a month. My shoulders hurt but typically that is the fibromyalgia and occasionally rhuematoid swelling. My hips hurt also from fibromyalgia.
    I had an elbow bursitis the size of a softball once for about a month. I was working as a production baker making italian boules up to 600 round loaves a day! But the bursitis was such an anomaly that it got me free beers at the local brew pub.
    Pleural effusions of my R lung sac. The pleural sac of my lung was full of a ‘fluid’ of sorts. I did not have any signs of the effusion and did not know about it until I returned back to the midwest and was hospitalized at age 34 or so. The effusion was drained 2x’s with a large needle going through my back to drain the gunk – each about a litre. Finally, in 2007, I was teaching and wearing myself thin and I thought to check on my lung and fluid – just in case. My lung specialist sent me to a cardio thoracic guy b/c it didn’t look right. The cario guy says it may be just thick fluid or it may be scar tissue. We won’t know until we go in laproscopically if it will be a simple ‘drain & remove gunk’ or a major lung surgery – thoracotomy. Turns out the gunk and subsequent drainage caused a build-up of scar tissue that would imminently cause my R lung to collapse and therefore I woke up after a 6 hour surgery with 4 huge drainage tubes in my chest wall. The cardio thoracic guy said most surgeons don’t like to do this surgery because it is so bloody, but he said he guaranteed to remove all the scar tissue and that it would never happen again – at least not in the R lung. That’s good becuase I truly would not go through that surgery again. It was the most painful experience of my life and a 6 month to a yearlong recovery. My surgeon was kind enough to provide me color photos of the sugery. So be advised everyone-check your lung X-rays.
    Back to the inventory: my fingers are all deformed except one (the middle finger L hand which actually got stung by a European honey bee on the very tip – very painful but no swelling ever -since sting- and no deformity). I have swan-necking of the first joint and grossly osteo deformed middle joints and grossly osteo deformed knuckles. My wrists had many cortisone injections and are currently somewhat fused and have limited motion. I had my R thumb flexor tendon replaced twice and had wrist synovectomy gunk removed and cleaned out twice. No extra tendons left for that little guy so he better hold out. Due to one of my biologics (after stopping it due to no insurance, probably Remicaid) I ended up with a weird R thumb strep-B infection. I was willing to cut off my own finger the pain was soooo severe and intense. I ended up in the hospital for 7 days on major painkillers and IV antibiotics and then faced debridement surgery – so I have a teeny tiny texter thumb now. My fingers, knuckles, wrists are generally in pain (obviously now with typing) and I have very little grip strength. I drop so my glasses, plates whatever…the broken stuffdoesn’t bother me anymore b/c I figure it’s just less stuff to clean/put away;-)
    Knees: Many cortisone injections. they are better since surgery (one year out now) but I was to the point many times, prior to replacement, of not being able to walk without pain meds. The swelling and stiffness was horrendous. I wish I hadn’t waited so long to have them replaced. I hope they will last long enough.
    My feet are deformed as well with bunyions and hammer toes. I wear Chaco sandals all summer and fall and dansko clogs or other clogs/slip ons in the winter. My feet are super wide due to gravity and RA spreading.
    My ankles are pretty constantly in RA/osteo pain when walking, standing. I have had probably 4-5 cortisone injections since my dis-ease. Not sure what to do about them. They are most painful am and pm. I have that window of opportunity from say 10:30am-5:00pm depending upon activity level.
    Now that I have been diagnosed with fibromyalgia I recognize that I probably have been suffering through it for a long time. Just pain/tenderness in muscles, chest/sternum pain,rib cage front side diaphram height pain back (rib cage height), shoulders – sides of arms, even down the sides/inner of my calves – tenderness pain,quads -hip and gluteal pain, quads -lateral sides and inside, neck pain and nerve damage C5 which tingles and sends heat and more pain across chest/shoulder and down arm, low back pain due to degenerative disc disease/stenosis? osteo related. It also seems my muscles are always tight to try to combat pain- not sure but I do not sleep well at all. Always tossing turning due to pain.
    My jaw has only hurt and been stiff during my initial flares – first 5 years or so.
    I have dry eyes too, but I deal with it. My vision used to be great until I turned 45 and now both near and far are going quickly. I believe the drugs cause dry mouth, but I just drink more water.
    I guess that’s about it for my body inventory. Here’s the med inventory:
    Methotrexate – self injections and pills – currently not taking any.
    Prednisone – pills and of course many many injections. Currently not taking any pills due to ‘sychotic’ type reactions to it – severely happy/angry/sad…. Will not take oral prednisone ever again.
    Gold shots – did nothing.
    Plaquenil – Currently taking with Sulfasalazine.
    Enbrel – took for about 4 years on/off self injection but worked only in the beginning then effects wore off.
    Remicaid infusions – on for about 2-3 years and worked best for both pain, fatigue, but lost job/insurance so no more remi.
    Tried to go back on once I got a job (with inusurance) but suffered 2 anaphalactic reactions to it.
    Tried Orencia while still had insurance but also had anaphalactic reaction to it.
    Tried Humera recently to combat most recent flare, but also had anaphalactic reaction to it. But that was kind of good news because then I was able to get IV Solumedrol which is cortisone IV form and that does not mess with my emotions/brain but does stop and calm down my flare as well as the anaphalaxis.
    Tried Cymbalta for fibromyalgia for 1-2 months but it made me suicidal in thought and speech, agitated, confused, unable to sleep, mouth sores and costipation. So I stopped that.
    My doc is prescribing gabapentin for my fibromyalgia now. I will take it at night as it causes fatigue – jsut what I need! But maybe it will help sleep.
    I of course, also take Zoloft for depression and have been for about 20 years. I take vitamin D, folic acid, plaquenil & sulfasalazine for the RA and 800 mg. ibuprofen 2x’s a day plus prevacid 24 hour generic every morning to protect my stomach. I take vicodin/percoset only as needed when pain is too great in pm occasionally am or during day.
    So currently RA et al. affects many systems – joints, muscles, nerves, organs, emotional balance. I don’t know about my heart yet, but I try to stay active as I can. I am much more positive now that I am off cymbalta. It was a scary feeling to be soooo down. I try to keep a positive attitude as I care for my aging parents, dog and self.

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    • August 20, 2013 at 3:58 pm
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      Hey everyone! I forgot to mention that I did 7 months of bee-venom therapy – that first middle finger sting was just due to helping a bee keeper. I took over 2000 stings during that time. Most along my spine, shoulders, knees, ankles, wrists and elbows. And it did help for about a year, but the stings were just painful (I probably had fibromyalgia at that point) and we did 3x’s a week – up to 30 stings per session. I was able to collect bees at the place I worked, a nature center with an observation hive. It also causes some itching and heat post sting. Just FYI*

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  • August 20, 2013 at 6:14 pm
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    Kelly,
    What causes the “deep impressions” in the skin on the picture of your feet. This happens to me as well only to a lesser degree, and I’m curious about it.
    Thanks.
    Christie

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  • August 23, 2013 at 2:30 pm
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    I want to thank you for your web site and what you do. This is my first time commenting. A RA friend sent me your blog and I felt so much better for days. Finally people who understood and did not think I was crazy or faking. Not being able to talk to anyone leaves you feeling very scared and alone. I have been to my doctors (have 2 specialist) one for RA and a one for spine. Unforutnely I was scheduled for a Spinal fusion of C5,C6,C7 within a week of RA diagnosis. This was 3 yrs ago. Now when I go to one for answers he says not spine RA and when I go to RA says not RA it’s spine. My family got to point they didn’t believe and we would only argue. I am 70, live alone and have way to much time to worry as I can’t work. Your inventory has made my day THANK YOU! because every single word was as if you were talking about me. It is exactly word for word my last visit with both Doctors and they each said one had nothing to do with the other. I have also had EMG which shows multiple nerve damage. I am on MTX, Prednisone, Planqnil, vitamin D, Folic Acid and Forteo. Forteo for bones to counteract prednisone damage. Can only take 2 more months and 2yr limit will be up. I also have Osteoporosis, Osteoarthritis, Osteopenia. My bone density
    test show “less than 2%” in both hips. I have also had to have 2 eye lens transplants due to Prednisone induced cataracts. Was legally blind for 1 yr before I could have surgery. I am a tough lady and a fighter can handle what comes my way but not knowing and being made to feel I am really not having these problems and pain is awful!. So that’s why the big than you for fighting for us and this blog it has honestly saved my life. Being able to talk with and hear from fellow suffers and friends (and I do feel like they are all friends) has literally saved my life. I was ready to give up. Now I know I am not crazy and I am not alone. God Bless Kelly and all the members of RA Warriors. Proud to be one!!

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    • August 23, 2013 at 2:40 pm
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      It’s wonderful to hear from you Carolyn. Thanks for taking time to comment today. So many of us are in a similar situation and somehow are made to feel alone – like we are the only one or it’s not as real as we say it is.

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  • August 24, 2013 at 4:32 pm
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    Kelly, thank you so much for everything! Your site is my first point of reference. I just started Enbrel yesterday. Everything I’ve read says the side effects are minimal. However, I woke up this morning not able to lift my head off the pillow because everything was spinning. I’ve never had vertigo before. I called the rheumy service. He said vertigo is not a side effect from enbrel but I keep reading more & more online about it. He prescribed antivert but it hasn’t helped yet. I don’t know what to do. Thanks for listening! Eileen

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  • September 21, 2013 at 3:08 pm
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    My R.A. started two years ago.
    It just keeps getting worse everyday.
    I am taking Humira.
    I hear all the time that you don’t look sick.
    Thank You
    Bob

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  • October 21, 2013 at 3:17 pm
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    Thank you so much for sharing your story. I know I have something that is going to need a Rumatologist to diagnose. But for now I struggle with the painful conditions that my Dr Smart wants to label mental illness or drug seeking behavior. I have had seemingly unrelated problems for over 20years. I’m praying God will speak wisdom to my Dr. I love your method of documenting your symptoms with photos I will start today. I pray for you and your pain. Thank you so much . Lonnie

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  • October 18, 2014 at 8:45 pm
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    Hi. I’m Karla from Texas. I’m 57 and was diagnosed with RA 10 yrs ago. After reading your posts, i don’t feel so crazy anymore. My doc doesn’t treat me that way. I just feel i should be able to keep upwith my friends. Pain is one thing. Fatigue is an entirely different animal.

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  • November 30, 2014 at 3:19 am
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    Anyone else tried trypterygium? I’m finding it really really effective.

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  • December 20, 2014 at 10:41 pm
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    I am having a flare. No one understands. Both of my feet and hand are killing me. My chest hurts, as do my knees. I try to remain active because that is what keeps me from being severely depressed. I walked the dogs today and cleaned the bathrooms as I am having company over the holiday. I had to increase my daily prednisone from 5mg to 10 mg so I can be “happy, active and fun” for my family at Christmas time. Also, so that I can be more comfortable and have the energy to do what I want to do every day with my children and mother. Reading these blogs, etc. makes me want to cry as it is the only time I feel understood.

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  • July 6, 2015 at 12:05 pm
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    I have lots of probs like you but also Eds 3 & Mcad which a lot of your symptoms could be.. Bren xx

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  • September 22, 2015 at 3:58 pm
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    I have been battling a long and severe bout of illness that sprang up AFTER a nasty kidney stone/infection (that went undiagnosed too long – so long that my kidney almost ruptured and I developed presepsis).

    DRY EYES: I wonder if you have seen a nephrologist or could obtain the necessary test to determine whether your kidneys are functioning up to par. Eye dryness and sty’s on you eyelids or even just crustiness in you lash-line can be a sign you kidneys are not functioning up to par. While the kidney performance was being impaired, I kept getting bigger and deeper sty’s in the opposite eye that the affected kidney (there is a reason for this opposite eye issue)

    SKIN BLEEDING too easily – can also be a sign of kidney function issues.

    ALSO DO YOU HAVE A HISTORY OF ANY OF THE FOLLOWING …
    HISTORY OF A TICK BITE OF ANY KIND (lyme or not)- EVEN CHILDHOOD
    HISTORY OF PNEUMONIA – EVEN IN CHILDHOOD
    HISTORY OF DARK URINE, UTI’s, KIDNEY STONES, URINARY INFECTIONS.
    EXPOSURE TO ANY FUNGUS, BLACK MOLD, ETC.

    BLOATING AND “WEIGHT” AROUND YOUR MIDDLE OR TUMMY THAT WASNT THERE IN YOUR TEENS/20s.
    HAVE YOU HAD STRONG ANTIBIOTICS

    HAVE HAD YOUR APPENDIX OR TONSILS OUT? THESE ARE IMPORTANT PARTS OF YOUR IMMUNE DEFENSE.

    I ask these questions because I’ve learned these are common denominators among AUTO-IMMUNE DISORDER patients. These

    DID YOU EXPERIENCE FATIGUE OR JOINT TENDERNESS (ESPECIALLY IN KNEES OR BACK) DURING YOUR PERIOD.

    DO THE RASHES GET ON YOU ELBOWS AND KNEES – AND DO YOU EVER GET EVEN A SINGLE TINY PIMPLE-LOOKING SPOT ON YOUR FINGERS, HAND, ARMS, OR FEET. MAY OR MAY NOT BLEED IF SCRATCHED. DO YOU GET CRUSTY YELLOW BUMPS IN YOUR SCALP?

    WHAT’S GOING ON?
    AUTO-IMMUNE DISORDERS SUCH AS LUPUS, RA, SJORGENS, AS (ANKLYOSING SPONDYLITIS), LYME/TICK-BORN ILLNESSES, PSORIATIC ARTHRITIS, AND GENERAL FIBROMYALGIA – ALL FALL IN THE SAME CATAGORY CALLED AUTO-IMMUNE DISORDERS – which you probably are aware of.

    AUTO-IMMUNE DISORDERS ARE DESCRIBED BY DOCTORS AS “YOUR BODY ATTACKING ITSELF” (however i have discovered this is just an over-simplified definition that is misleading AND is used to move you onto a drug regimine of very toxic drugs called NSAIDS, STEROIDS, and a new class called BIOLOGICS, and even CHEMOS).

    IS YOUR HLA-B27 marker positive? (this is important – it is important to understand something your doctors will not explain.
    This is a Human Leukocyte Antigen #B27. This is often used to diagnose a specific disease. This makes you think it is a genetic marker that is predictably associated with a disease. wHEN IN fact, it is “non-descript” meaning it is present in many Auto-Immune Disorders, not just the one they picked for you.

    They will tell you it’s genetic and that it is uncurable but can be treated with pills. I just so happened to know my HLA-B27 factor was NOT present a few years before the sudden onset of this crippling illness. I went to a Rheumatologist who said it meant I had AS. When in fact my symptoms dont match AS at all. My symptoms match Lupus to a T and some RA symptoms and some “lyme” symptoms. She urged me to start on Embrel (a very dangerous biologic).

    She didn’t bother to tell me I am not a candidate for Embrel since it causes lymphoma and I am a lymphoma survivor (divinely healed in fact). But I had just heard the commercial and in fact I stepped up and declined to take the Embrel – she seemed irritated that I knew not to take it. So I sought 2 more opinions. Both agreed that I had no physical signs of AS and she had done no specific tests for AS.

    The sepsis got into my entire body tissue and even my spinal (epidural) and caused excessive fluids, lymphedema, joint fluid, gout-like inflammation in the joints of my toes, ankle, elbow, wrists, hands and fingers.

    SO I WENT ON A HUNT SCOURING THE WEB (MAYO, NIH, JOHNS-HOPKINS, ETC) FOR INFORMATION ON HLAs, A-I Disorders, Lyme, etc.

    I have ruled out lime for myself.

    I prayed for God to give me some help since I had progressed to the point of needing a wheelchair (partial paralysis!!).

    A lady in my Bible Study group recommended “Strain-Counterstrain” Therapy – and that was the ticket. it halted the progression and turned around (recovered my ability to walk and climb stairs).

    The specialist treating me had a student in one of his classes who pointed out that a neurosurgeon was putting implants into peoples VEGAS nerve to cause it to suppress the Spleen’s “over-production of Cytokines ( an auto-immune protein who’s job is to find foreign proteins and attack them … sounds familiar? Your body “attacking itself”. ) Your body is attacking invaders that are hiding in your joints and other tissues. LIGHTBULB!

    SOOO i did more research and learned that the spleen ramps up this “RAPID/HIGH RESPONSE MODE” to fight a bad illness (virus, fungus, parasites, or INFECTION … especially an infection to the KIDNEYS, lungs, intestines, liver, bladder, …) WHICH IS WHAT I HAD! The kidney infection has spread to my spine, intestines and ovaries – and into the body’s septums. wHAT’S MORE THE LENGTH OF TIME IT WAS OVERLOOKED IT DID SERIOUS DAMAGE TO MY KIDNEY.

    I had also been given super high strength antibiotics under a misdiagnosis of Lyme. WHICH WIPES OUT YOUR GOOD BACTERIA further weakening your immune system.

    SO WHAT HAPPENED IS THE INFECTION CAUSE THE BODY’S NERVES TO CONSTRICT SO HARD THAT THEY CONSTRICTED THE FASCIA, WHICH DOESNT RELEASE ITSELF LIKE YOUR MUSCLES WILL, LEAVING YOU IN OVERALL BODY PAIN. AND SINCE IT CONSTRICTS AROUND NERVES AND TENDONS, IT CAUSES THE PROBLEMS YOU DESCRIBE IN YOUR KNEES AND FEET.

    Find the most highly qualified counter-strain therapist you can – and trained by the Jones Institute.

    (back to the spleen and the vegas nerve implant. My SCS therapist knows a myofascial release for the vegas nerve so we did it. I went from barely functioning to a huge reduction in general swelling and overall pain. I now have a couple of specific sites to finish treatments for. So out of curiosity I googled Embrel and spleen and found that all biologic forcibly suppress your TNF factor immune response – which is why it leads to cancer.

    All bioligics do this – it doesnt make you well it lets the disease go unchecked/unattacked. it puts your immune response to sleep. so if you got an infection it would not fight it.

    I am finding that critical illnesses also drain your body’s nutrients. So the last 2 things is eat a SUPER HEALTHY DIET OF RAW FOODS – stay away from sugar, excessive starches, artificial sweeters, and nightshates (tomatoes, peppers, eggplant, white potatoes).

    Get all the natural vitamins you can. It is possible to reverse Auto-Immune disorders.

    And keep your water up!!!

    I AM HAVING SUCCESS WITH THE FOLLOWING REGIMINE

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  • September 22, 2015 at 4:00 pm
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    also dry eyes and dry lips or skin is also a sign of too little water intake – and possibly too much caffeine

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  • September 29, 2015 at 6:18 pm
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    i looked up trypterygium – and it is defined as an immuno-suppressant. I would submit respectfully that it is POTENTIALLY dangerous to take any substance that is known to or marketed for the purpose of suppressing your immune system. If your immune system is ramped up there is a reason. I have done a lot of reading medical papers published on RA, Lupus, AS, Lyme, Psoriatic Arthritis … etc. And when I read the medical findings done by experts in the field (i.e. NOT webMD and the like, but bonafide Doctors publishing their findings to the medical community – you gotta know how to get your hands on those papers.) I have discovered that RA, AS, and Lyme (and one STD) are all classified as Auto-immune disorders – I have uncovered medical documents that state that all these auto-immune disorders are caused by a lingering viral, bacterial, fungal, and parasitic infection that has gotten into the body’s joints, spine, myo-facial tissue – and thus able to “hide” in these locations outside of the bloodstream and they will “flare” up and become “active” when the immune system is busy with other issues or when the immune system is too weak to knock them out all together. This is why the spleen goes into “acute response phase”.

    The danger of taking an immuno-suppressant drugs (pharmaceutical “biologics” or OTS “homeopathic”) is that they artificially force your spleen’s immune responses to lower or quite producing the immune responses. This can (as the pharma corps admit) lead to serious infections and cancers as well as a host of other issues that crop up because you have shut off the heart of your immune system. Lung, liver and Lymphatic cancers are quite common with the biologics. The reason is that the spleen produces TNF and TNFa BOTH of which are tumor fighting cytokines which also fight other infections as well. A medical journal paper from a Doctor in Great Britain has linked AS to pneumonia.

    I have personal experience on this. Almost 20 years ago I started getting mysteriously ill. I was referred to a rheumatologist because the symptoms were fatigue, joint and muscle pain, chronic pain from head to toe. I was told my HLA-B27 marker was negative but that wasnt an iron-clad test – therefore they decided I had some form of RA/Lupus. They never asked me about my diet. They never checked for any other symptoms that are general signs of something specific. (like unexplained hair loss, chronic itching, frequent unexplained vomiting and nausea, knife pains in the soles of my feet) I had unknowingly gotten a contact poison from pestacides/herbacides, but that would be discovered when the grapefruit-sized tumor was finally found and they type of cancer was diagnosed as a specific type related to Agent Orange exposure.

    You likely never hear your Rheumatologist tell you that your spleen is in the ‘acute reactive phase’ and producing high levels of TNF or TNFa. They just decide without educating you, to put you on suppressants that could eventually kill a person.

    I compared the Lupus list of symptoms to the Lyme disease symptoms and they are almost identical, leaving me to wonder if Lupus is the advanced stages of some type tick-born parasite that has lurked in your body until your immune system was too weak to keep it in check.

    If not a tick-born illness, then possibly a different viral problem that comes from who knows what.

    This has led me away from pharmaceuticals and toward eating and exercising to strengthen my immune system.

    And I have also come across a prayer therapy – applying healing prayers from the Bible to my body and I went through a spiritual cleansing class too. This has benefited me.

    I have been healed of Lymphoma, a tubal pregnancy, torn/separated AC joint. So I can personally vouch that asking God to heal you works. And it usually works very quickly. Sometimes it takes some time for you to hit the ronde-vous point – sometimes the healings are in separate stages when there is overlapping issues. But usually the healing is pretty swift and always painless.

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  • October 30, 2015 at 12:05 am
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    I’m experiencing theses symptoms. . Is there anyway you can email me with advice, when I went to my internist with all my symptoms she just told me to do blood work and see a psychiatrist for anxiety because she said it sounded like anxiety.. But I know something is wrong other than that, my hair is falling out and I’m having seriously bad memory problems. . I’m 25 years old

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  • November 22, 2015 at 8:52 pm
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    I did not read everything in this post, but your symptoms closely resemble that of Ehlers Danlos Syndrome. EDS is rare and often misdiagnosed due to the complexity of the many symptoms. My mother and daughters faint. Our diagnosis is EDS III/POTS Syndrome.
    It is an dysautonomia.

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  • December 1, 2015 at 9:35 pm
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    Hi Kelly, I am feeling thankful that I have not had to deal with the list you have shared. What a brave soul you are! I have recently been “sort of” diagnosed. At the beginning of this year I felt amazing then my health seemed to drop. So far I have just been experiencing what I thought was carpel tunnel in both wrists. Then clinic thought I might have tendinitis in my right arm, I only went to the doctor because it wouldn’t go away. I began running last year but had to slow down because of bad planters fasciitis in both feet and aches in my hips. I am am also waking up to about 1/2 an hour or so of stiffness. Finally went to my GP for debilitating cramps in the back of both hands and in the muscle along the side of my hands. I have burning in the tips of all my fingers and feel hot on the inside of my wrists. The pain is now constant. A tiny bit of swelling and sore finger joints. My blood tests showed everything normal except anemia and an RF of 143. CRP was normal but an anti-ccp test or an ESR test was not done. I have been referred to a rheumatologist and put on Naproxen but my appointment is not until January. I am nervous about what to expect. Thank you for sharing this, I imagine that I will need to keep track of everything as well. Do you keep a health diary and what do you do to keep positive?

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    • December 2, 2015 at 12:23 am
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      I have only kept track at times becuase it takes so much time for me – I do think that journaling symptoms is useful for periods of time – it doesn’t have to be year in & year out to be useful.
      I rely on my faith & stay determined to be the person God calls me to be despite this destructive force of RD. It is a battle at times but it is worth it.
      I am sorry you’re waiting until January – I’ve heard good rheumatologists call that kind of wait for diagnosis “a crime” because early treatment is the best chance at remission. i don’t know how long you’ve had symptoms – so I don’t know if it’s still “early,” but I’d call each week & ask if there are cancellations. Good luck to you.

      Reply
  • December 2, 2015 at 8:43 pm
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    Thank you kindly Kelly. I would say everything that has happened was probably over the last eight months. I am so tired of it. 🙁 But trying to keep positive as well. Thank you for all you do here. I am learning so much.

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  • December 3, 2015 at 6:33 am
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    Hi Kelly. Glad to have found your website – tho scary, it is a wealth of information. I was diagnosed with sero-negative RA 3 weeks ago and have been googling everything I can to learn how to deal with this enemy. A little background in my case – I was quite athletic, power walked 4-5 miles per day until a fall in the winter of 2010 resulted in a double laminectomy – done much too late in 2012. I have residual lower back pain 100% of the time but in 2013 I began having painful shoulder issues that I attributed to leash-walking my big dog (tho I always walk him on the right side, why was the left shoulder joint hurting so?). Noticed I felt extremely tired and achey too much of the time by 2014. Got plantar fasciitis in both feet which took 8 months to resolve. Four months later it came back, had basal joint replacement in my left hand that failed, but immediately after the thumb surgery my left ankle swelled to twice the size it should be. Drs. searched for a blood clot first…finding none, was diagnosed with tendonitis on top of the PF. When the right ankle decided to join the party, I was referred to a rheumatologist who did blood work that showed there was something inflammatory going on but was negative for the RA factor, thus calling it sero-negative RA. I go over all tests and the rheumatologist’s recommendations with my PCP since I have known him much longer than the rheumatologist and I figure a second opinion can’t hurt. While testing, the rheumatologist put me on prednisone and water pills for the swelling, to avail. I have had 3 weeks of methotrexate (15mg total) but the ankles are just getting worse and almost overnight 3 toes on the right foot became hammertoes. Walking, especially getting up, has become quite a challenge. Thankfully the PF has resolved – 11 months later – but the podiatrist fitted me yesterday with an ankle brace because the left one flops around so and it hurts so, what with unrelenting swelling. Next week I go back to see the rheumatologist. I expect some sort of medication change which I welcome. Like others, I feel this devil RA has been lurking for a long time. At the age of 10 I had Rocky Mountain Tick fever and wasn’t expected to live, back when that sort of thing was rare, or rarely diagnosed early enough (I am 56 now). In my early thirties I was diagnosed with cervical disc disease and like you, I and even others can hear my neck pop and grind. Epidurals help while they last. My fingers go through so many stages (tho pain free) that I’ve had my rings re-sized twice in the past four years. When they get really cold they will turn blue up to the first knuckle and from there to the tip remain extremely white. I believe all these odd things are related to undiagnosed RA. SO, that’s my experience so far. I just want to say thank you Kelly for posting all that’s happened with you and for forming this website so we can share and learn what we can from each other in order to fight this awful thieving disease.

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  • February 6, 2016 at 12:04 am
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    Hi! I’m so glad to read your inventory as I have been experiencing the same symptoms almost exactly! Prednisone was the only thing that worked and I turned out to be allergic to many of the meds. I thought I’ve been going crazy!! I’m so glad I’m not the only one! However, it’s kinda sad too to know that there are others who are suffering as much as I am too. ? It makes me so angry sometimes because I don’t want to be disabled or feel any worse pain than this already. I use laughter everyday to cope and never stop moving! I’m sure you probably do the same…what else can we do? Thanks for sharing! I’m glad I’m not alone! Sometimes I feel that gravity hurts. Do u feel that way sometimes too?

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  • May 13, 2016 at 1:10 am
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    Hi there.
    This article I feel was very helpful to me I am only 17 years old but I have been experiencing a few of these symptoms for a while now. At first we thought it was allergies but I have been back and forth to the allergist and i don’t think it is that anymore. I wanted to list some of my symptoms and see if you think it might be RA.

    swelling in hands and feet as well as veins in both/ shooting nerve pains
    weird skin indentations on hands including palms, arms, legs sometimes feet etc
    popping of joints when experiencing symptoms wrists, legs, arms, ankles, knees etc
    red streaky lines when experiencing symptoms appears mostly on arms and legs and then disappeared sometimes accompanied with blotchy skin
    last one may not be related but weird bite looking mark sometimes painful often experiences great swelling around it location varies was first on foot and is now on hand (causes pain in certain area when typing.

    please please let me know if you think i could have ra i have been experiencing this symptoms for a year and a half now and it is very overwhelming.. ANYTHING U KNOW COULD HELP

    rachel

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  • August 2, 2018 at 11:30 am
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    I have been seeking help for all of these symptoms for years. I’ve done the bloodwork with nothing abnormal or indicating RA. I’ve done x-rays. I’ve had a bone scan (the only thing there was some “abnormal jaw movement.”) My mom, my grandmother, and her mother all have RA (and that’s just on my mom’s side!) Am I crazy for holding on to this diagnosis? Either way, this post made me feel like I’m not alone, so thank you. 🙂

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