Your Rheumatoid Arthritis Onset Stories, page 5 | Rheumatoid Arthritis Warrior

Your Rheumatoid Arthritis Onset Stories, page 5

Click here to view a complete listing of Rheumatoid Arthritis stories on this site with disclaimer.

Kay’s Rheumatoid Arthritis story
Leigh Ann’s Rheumatoid Arthritis story
Vicky’s Rheumatoid Arthritis story

 

Kay’s Rheumatoid Arthritis story, in her own words

Kay Rheumatoid Arthritis storyI felt the same way about re-telling my story.  It seemed exhausting, and I have told it too many times.   But I also know how many stories I had read in my search for answers,  and how they really helped me.  More than any doctor ever, did.

My symptoms started years earlier too.  I didn’t recognize them until I was diagnosed, and it all made sense. 

I was running marathons.  I always felt that running was more painful for me.  All my friends trotted along like gazelles, and I felt like a warthog.  I hurt, and it took longer for me to recover. Starting out on a run, it took me half an hour to feel human and pretend I was enjoying the exercise.  I was stiff and sore and needed a lot of stretching, and slow starts.

During one marathon, my hip started hurting badly.  So much so, that I had to stop running, which was unheard of for me.  Plod along, never quit, grimace through the pain.  But I stopped halfway.

Then came the trips to doctors, hobbling along, first with my right hip, then weeks later my left one.  Never at the same intensity of pain, and sometimes not together.  The pain was like someone sticking a dagger into my bones and twisting.  Hot white unrelenting pain, and it felt different.  I’d had twisted things and broken things, and it was none of the usual suspects.

So, having no answers, and no relief other than aspirin products, I stopped the running.  I started hiking.  I loved it too, it was almost as good as running.  But I noticed that after about an hour ..or 10kilometers…my toes would sting like 40 bees attacking them.  I couldnt walk on them, had to hobble on my heels.   I still think about how many hikes I planned and forced myself on saying “no, youre not stopping me “feet”, I really love doing this and I need to be active”   The toes never cared about my feelings.

Again with the doctors, what is that?  Why do my toes feel like they are burning tingling swelling up and become useless?  No answers.  And some doctors even hiked with me, they were my friends.   They were baffled.  Never heard of it.   I was in my late 20’s.

Years passed.  

Then the trauma piled up.  Married 28 years and divorcing, selling the family home, my youngest sister died of cancer, my father had leukemia, and other assorted stress.

I started having terrible sweats in the night.  Woke up and the whole bed was soaked.  I was stiff too, like I’d used a bunch of muscles I never use and was paying the price.  Only I had done no exercise the previous day.  I was 48.

And the fatigue!  I went from having the most terrific garden, flowers, doing art work and volunteering for the community….to a messy house, garden overgrown, meals at take out please!   I kept saying I had the flu, but after a few weeks, noone believed me anymore.

The “AHA” moment came when I got up to go to work one day, and my entire body was stiff like the Tin Man.  I’ve heard the tin man expression before, and you’ll know it when you feel it!    Even my jaw was wired shut.  I couldnt open my mouth enuf to shove toast in it.  

I was truly frightened. Because no matter what, from that moment, I knew I had something seriously wrong with me.  No doctor was ever again going to dismiss my concerns.  Or if they did, I knew it was their bad skills, and not my imagination. 

So, after having to convince my family doctor that I needed to see a rheumatologist, I had a nice long wait of three months. She told me she thought it was Gout. 

I figured out that you needed to say key words before anyone would pay attention.  They are things like “swelling on both sides”  “flu-like fever” feeling,  “extreme fatigue”, “unable to perform normal duties” and list them.  A big one was “stiffness for more than one hour” 

I never had any indication that I had RA as far as the tests would show.  They were all normal.  I remember the rage everytime I heard those words.  “negative”.  I wanted to boot my own body down the curb.  It was like it was hiding the disease from everyone but me. 

The three months of waiting was torture.  I had to have help to get out of bed, dress, and my blood pressure shot up to unreasonable no.s.  My family doc gave me six weeks off work when she took my BP at the office.    My body rebels with high blood pressure when I’m in pain.  I can always tell when I’m going to flare by the high readings.  (Ive had one doctor tell me this is possible and explained why, and another tell me that I’m nuts)

The rheumy appt in Canada was such a disaster.  Awful awful man.  He didnt look at me, told me I needed prednisone and mumbled something like polymyalgia rheumatica and left.  I didnt know he left, he just walked out.   The nurse had to come in and tell me to leave. 

I’ve since read his reviews on rateyourmd.com and he has a dismal record. 

I spent a year on prednisone with him.  No tests, no MRI, no xrays.  I got worse and worse.  My family was pressuring me to get him to do something. My family doctor was mad that I was on prednisone because it was making my blood pressure worse.

I told him I wanted a bone scan.  He said I was being ridiculous, that I did not have RA, and no matter how much I insisted, it was not my diagnosis.   Well, I finally got the bone scan.  I had gone on the internet to find out what happens, what good results looked like and what bad results looked like on the scan. 

I knew if there were bright white spots in the joints, symmetrical, that it was RA.  I watched as every joint lit up like a christmas tree. 

I could tell the technician saw what it was too.  She treated me tenderly afterwards.  

I told her, “I studied results and that is rheumatoid” She never corrected me.

That horrible rheumy never called me back.  He would have had to admit it was RA, and wouldnt.  I went and picked up my results and went straight across the border to U.S. rheumatologist.

I found a wonderful rheumy who held my hand and said: I quote: “I’m sorry you’ve had to suffer all this time, its obvious you have RA and we will put you on the drugs that will make you feel better immediately.  She never charged me for the first visit.  What doctor does that?  

I should say that I never had obvious “hot red swelling” ..it just hurt a lot.  Thats what the first rheumy kept saying to me “you have no swelling”.  But the second doctor took one look at me and said “oh yes you have swelling ..here and here …and here.  I was so relieved I could have fainted.

So it takes a skilled doctor to make a good diagnosis.  ( I now have the red hot swelling that everyone can see, but it took years to actually be obvious)  Now my tests are not negative either.  Five years later.  Can you imagine not getting meds for five years because I didnt have the proof? 

She was right about feeling better.  I had a short wrong turn detour with Arava, which made my hands and feet numb ( had to have EEG ..diagnosed with Peripheral Neuropathy) ..which is a known side effect of Arava.  But now, I’m on methotrexate, and Enbrel and have had a pretty comfortable three years.  Although now I can feel its wearing off ..I only get a day or two of fairly good pain relief. 

I have been dealing lately with dry sore eyes, floaties and blurring.   On to the next problem associated with RA!

Kay works as a wedding videographer. She can be found on Twitter @kaypros.

 

This is Leigh Ann’s Rheumatoid Arthritis story, in her own words.

Hi my name is Leigh Ann. I am 33 and live in Texas. I have Rheumatoid Arthritis. I was officially diagnosed by a doctor with RA in October of 2008. This is my onset of RA story.

In September 2001 I was half way through my first pregnancy and experiencing extreme pain in both of my hips. My OB and all my friends and family told me it was just my body adjusting to being pregnant and preparing to give birth. I gave birth in January of 2002 and the hip pain did not go away.  I should mention that I am blessed to be married to a physical therapist. My husband would take me to his clinic and do ultrasound, heat and various other things to help relieve the pain. I would temporarily feel better but the pain would always come back. Fast forward four years and through 2 more pregnancies, it’s February 2006, I had just turned 30 and delivered my third child. I was still experiencing bilateral hip pain, and now I had pain in my left shoulder, and persistent pain in my lower back. In July 2007 I finally went to the doctor and I chose a doctor that specialized in Allergy & Immunology, Internal Medicine, and Rheumatology. He took x-rays of my neck, left shoulder, lower back, pelvis, and hips. According to him the results stated that my neck was fine. Left shoulder was fine. Hips were fine. Pelvis was fine. My spinal x-ray showed that I had mild spondylosis at the L4-L5 level, mild degenerative facet arthropathy at the L3-L4 level, mild annular disc bulge at L4-L5, and several synovial cysts at the L5-S1 level. He gave me some NSAIDs and a pain patch for my hips and back. That was that… oh and I needed to lose weight as I was about 40 lbs too heavy so he sent me home with an ‘at home’ exercise routine.

By September 2007 I was experiencing pain in my wrist and some numbness and tingling in my hands and fingers. At the time I was finishing up my college degree long distance online. I spent a lot of time at the computer writing papers and emailing my classmates. When I started to experience wrist pain, first in my right wrist than in my left, my husband and I assumed it was carpel tunnel. It was Thanksgiving day 2007 and I was on the phone giving my sister directions to my new house and my hand went totally numb and I could no longer hold the phone. I switched hands and the pain in my hand when I gripped the phone was too much. I handed it over to my husband to finish talking to her. I was concerned and frustrated. By December 2007 I was still having pain in my neck, wrists, pain in my left shoulder, and now my hands were sore, my fingers were tender to the touch, I had lost 50% of my hand strength which caused me to struggle with holding a pen, to type, drive, and do most basic things, and I was waking up in the morning with my hands stuck in a claw-like form. My husband bought me a paraffin bath unit for my hands and every morning I would dunk them just so I could function. I was struggling with pulling the covers up at night, sleep was painful when it came. I was tired and cranky, frustrated and knew that there was something going on and I was going to figure it out.

I am the type of person who needs to know the details. I love to research things and frankly the details in things interest me a great deal. So I took my obsessive researching need-to-know trait and put it to use. I Googled, and searched and read everything online I could find about painful stiff hands and fingers. I did the webMD symptom checker; I went to every chat site and message board I could find that ever mentioned “painful, stiff, claw shaped fingers”. I came up with Rheumatoid Arthritis over and over again. I talked to my husband and he agreed with me that it seemed likely that I could have RA. I still didn’t know much about RA and I only had pain in my hands and wrist, I didn’t think that was enough for it to be RA. (at the time I didn’t tie in the pain in my shoulder, neck, back, or hips to be apart of the big picture). In January 2008 I went to see a hand and upper extremity specialist. He did a nerve conduction study on both wrists, and my shoulders. I had mild abnormal results in both wrists but nothing so far out of range to really indicate anything. He called it carpel tunnel syndrome and sent me to physical therapy (yes my husband is a physical therapist) and had a brace custom fit for my wrists.

Side note here… because my husband is a physical therapist I was ALREADY doing PT and I had been sleeping in braces and wearing them daily for almost 6 months. So to have this “specialist” just do the same thing that I have already been doing royally ticked me off.

Meanwhile in the following weeks I started to have pain and stiffness in my ankles. They were swelling and I was barely able to walk in the morning and climbing the stairs to get to my children’s rooms was next to impossible. In February 2008 I went back to the first doctor and he took x-rays of my wrists and found nothing “remarkable”. He also did a blood test to explore the possibility of RA. The results came back negative for the RF factor. I did NOT have RA. End of sentence – according to this particular doctor. So I took matters into my own hands so to speak and sought out another doctor. This doctor was a surgical radiologist; he used ultrasound to look at my hands, wrists and ankles. The results indicated bone erosions in my fingers and active inflammation in all of my fingers and both wrists and suggested that an MRI would be recommended. My ankles each had rather large ganglion cysts but “no indication of any inflammatory arthritis”

June 2008 I had I met with a neurosurgeon/spine surgeon for the persistent neck pain, L shoulder pain, numbness and tingling in my left arm and hands. He did a cervical MRI with contrast and one of my brain. He ruled out MS and various other disorders. He suggested I go to an orthopedist to have my shoulder looked at, as he felt that it was the source of my problem. I went to doctor number 5 in late July 2008. I had x-rays and an MRI of my should done and was declared to have a shoulder impingement and rotator cuff tear. In August 2008 I had shoulder surgery to repair it. I had extremely high hopes that this was the fix to my problem. Six weeks after shoulder surgery I was cleared from my orthopedist yet was still having hand and wrist pain. The neck pain was still present, the ankle pain was still present, the hip and back pain still there. BUT I DID NOT HAVE RA!

Every doctor that saw, I was tested for RA and was negative for the RF factor turned the page and said I must have fibromyalgia and/or carpal tunnel. By this time I had my very own personal pharmacy in my bathroom. I had narcotics ranging from both ends of the spectrum, and just about every name brand and generic drug that was up and coming at the time to deal with pain. I had officially been brushed off 4 times by doctors and referred to pain specialists. About this time my husband had switched offices and brought home several of his professional magazines. I was helping him discard them and for whatever reason I picked up one that had on the cover in small print in the bottom left corner “Diagnosis of early RA key to clinical management”. I stood over the trash can in my kitchen and read the article. It was like reading about ME! It talked about” 20% of RA patients being seronegative…will have no RF marker”. I drank in the information from this article and then at the end of the article it gave the information for the author, who just so happened to be a Staff rheumatologist at a local hospital near where I lived. I strongly believe it was divine intervention that I not only found that article but noted who wrote it.

I promptly handed the article over to my husband and went to search for the contact information for that doctor. I called and asked if they accepted my insurance, they did (yea!), I asked for an appointment and the next available was October 8th 2008 just 2 weeks away. By this time I was CERTAIN that I had RA and felt like I was just searching for a medical professional to agree with me and to help me with the pain. My husband went with me to my doctor’s appointment.

This doctor was like an angel. She looked me in the eye, she touched and felt each joint in my fingers, and she looked at and touched at every one of my major joints. Then she asked me some questions, and I will never forget what she said next, she said that we’ll get some blood in a few minutes but I really don’t need them to know your diagnosis, you have rheumatoid arthritis. You have 8 out of 10 markers for RA; I am surprised that nobody has caught this before. She immediately put me on prednisone and then set me up to come back in a couple of weeks to start on methotrexate.

Then 2 weeks after that visit I came back again to start my humira injections. October 8th 2008 I learned I officially had RA. I have been managing with some success since then but am still struggling with it as we all know RA doesn’t play by the rules. I recently switched from humira to enbrel and while it seems to have picked up where humira had left off I am not pain free. I am stubborn and relentless. If I hadn’t been I don’t know for sure if I would have ever gotten the correct diagnosis. I feel strongly that it God that put that article in my hands and it was His Grace that got me through the pain and discomfort for so many years.

It was not so long ago, that I said to my husband that I can’t really remember what it was like to have been in so much pain nor how I handled it with 3 small kids and faking a smile all the while. I am grateful for my doctor and the medication she has given me to have the life I have now back. While I’m not 100%; I still have hand/finger pain, and suffer with hip, shoulder, back, neck, ankle, foot and toe pain but it is not like it was before. I can walk and run quickly to an injured child if I must, I can climb the stairs to my children’s rooms, I can do most things now just with some modifications.  I try not to take the good days for granted because I know a bad one is just around the corner. I hope that my story helps somebody out there to see that you don’t have to have the RF factor to have RA and if they are suffering and being brushed off, to not take no for an answer and to keep searching for the right doctor.

This is Vicky’s Rheumatoid Arthritis story, in her own words.

Vicky's Rheumatoid Arthritis storyHi my name is Vicky and I am 24 years old and live in Georgia. I was Diagnosed with RA about 6 months ago and at the time I was so glad to have an answer but knew I was about to be in for the longest roller coaster ride of my life.

It all began when I was 7 or 8 years old, I was a very active child but always complained of “hurting” especially in my hands and legs. When I was about 7, my mom woke me up for school one day and my ankles were swollen the size of softballs and I told her I couldn’t walk, I got out of the bed and fell down. She immediately took me to see my pediatrician, who did a full exam and tons of lab work that all came back normal. I had multiple episodes of this as a child and he continued to tell my mom it was normal just from “growing”. I continued to be a very active teenager playing soccer and cheerleading but still had a lot of aches and pains.

At 17, I started having severe problems with my lumbar spine and after seeing a specialist, we found out my L5-S1 disc had began to degenerate and we choose to have a lumbar fusion but no one could tell me why this was happening at such a young age.

I then began to have severe pain and swelling in my hands and feet, to the point where I had to run warm water over them in the morning just to move, so this year at my yearly physical with my GP he ran the routine lab work (ANA,RF,Sed rate,etc.) My labs came back, once again mostly normal, except a positive ANA. Now this scared me to death because my first thought was lupus. My mothers twin sister had recently passed away from having lupus and RA so needless to say I was scared to death.

My GP then refered me to see a Rheumatologist, who in my eyes has been a angel sent from heaven! She did some more labs and a full physical exam and said I definitely did not have lupus but I have sero-negative RA, and she believes it is Juvenile RA that was misdiagnosed which would explain all the pains as a child, the degeneration in my spine and all my joint pain.

I was immediately started on Prednisone,Plaquenil and Diclofenac. After about 2 months I was only seeing minimal relief so she added MTX 4 pills a week. I had horrible nausea and abdominal pain and ended up having to have my gallbladder removed. She then switched me to MTX injections which I just started this past week and I am hoping to see wonderful results if I could just get through the night sweats that come with it!

It is so hard being 24 and recently married having this disease. My husband and I actually argue a lot more now, because he says I never feel good and I can’t use that as an excuse for everything, but it’s just so hard for the both of us because he just doesn’t understand. I am hoping the new year will bring health and painless days to my future. 

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23 thoughts on “Your Rheumatoid Arthritis Onset Stories, page 5

  • January 4, 2010 at 7:35 pm
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    Ladies:

    These stories sound so much like me. I won’t take you through my symptoms except to say that my pain started in my shoulder too, and I was diagnosed with shoulder impingement and treated with multiple cortisone injections. In addition to bilateral joint paint everywhere, I now have the cysts. Only they’re not just in both ankles, they’re also in both wrists, both feet, and on one knee. We’ve just moved into one story house because I couldn’t carry my 17 month old upstairs in our old house. I’m waiting on a RD appointment. I have a positive ANA but my RF is low. I have a family history of RA. My internist keeps saying fibromyalgia. I too have a pharmacy in my bathroom. I’m terrified that the rheumatologist is going to be equally dismissive. Today I couldn’t even keep my hands firmly on the steering wheel of the car… Thanks for telling your stories.

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    • January 4, 2010 at 7:46 pm
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      Hi Amy, I’m sorry you are going through this. If you are “dismissed” it will be tough, but keep trying. You need an answer. Many RA patients get the Fibromyalgia comments first & then it’s changed to RA. Either way, don’t give up.

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  • January 12, 2010 at 2:23 pm
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    Thank you for sharing your stories. It just blows me away how long it took for your diagnosis. It is unbelievable the ignorance of some doctors. I learn from every story I read, thanks again.

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  • January 20, 2011 at 3:04 pm
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    Kay, Leigh Ann and Vicky I am so sorry to read about your pain and confusion. I am right there with you ladies I am 48 and 3 years ago I woke up and when I went to get out of bed I felt as if I had bricks tied to my knees, the pain was unbearable. Fast forward to now I have RA I am on Enbrel, 17.50 mg of MTX once a week, Folic acid every day and Celebrex 2x a day. Ok that is the meds. I have a stool in my shower because I cannot stand in the shower long enough to do all I need to do. What about a bath? Ha I can get in with a big splash, but getting out that is a whole other story with a unhappy ending- so I no longer try. I put my shampoo and conditioner in soda bottles because the mouth is bigger and this means no squeezing. I have a spaghetti dipper I use to wash my hair with when I can only lift my arms so high. I have front snapping bras when I cannot bare the pain of snapping my bra and turning it around. I have quilts that my mother gave me which I no longer use because I did not have the strength to pull them up on me at night. I now use light blankets. I have a stool to set on between my sink and dishwasher to help me do the dishes. I have to walk backwards down stairs so my knees do not feel as much pressure. I did not go upstairs in my house for two years. When my wrists hurt my son picks me up and drives me to & from work. I can’t pick up my grandchildren. That infuriates me, they cannot sit on my lap because this hurts my knees. One time I was going down the stairs of my sons home and my grandson son said look BeBa I am walking just like you. Now it is funny but then it was so incredibly sad. Seat belts, ignition starting and removing the gas cap were a nightmare. I will not even go into the bathroom detail unfortunately you probably know what I am talking about. When the RA gets in my jaws brushing my teeth is nearly impossible. Sometimes you just have to use mouthwash. LeighAnn I know about the hand/claw thing in the morning I would have to set my alarm a hour earlier than I needed to take my celebrex and do my hand exercises. I have to use plastic grips on doors to open them. One morning I woke up and I was in such a bad mood or a pain mood anyway it was raining outside and my son was knocking on the door and I heard him say mom hurry I am getting soaked. I started laughing- When I finally got to the door I told him the one thing you never say to a person with RA is HURRY. I am doing much better now and sometime I too wonder how I stood so much pain before the Enbrel and Celebrex. God bless those who do not have insurance and cannot afford medication. Ok I could go on for ever and ever and ever but I just wanted to say I will pray for you all.

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  • February 6, 2011 at 1:25 pm
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    all of you are “reading my mail” as they say. It is such a relief to find out you aren’t crazy. Thanks to all and best wishes for better days ahead. Never give up and NEVER walk in fear!!

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  • September 28, 2011 at 2:07 am
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    I think Rheumatoid Arthritis is a horrible disease.

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  • September 28, 2011 at 2:14 am
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    I suffered for three years in severe pain and felt no hope of ever finding out what was wrong with me. I was so swollen, sore, just the weight of a sheet lying on my feet was excruciating. The worst part was that I kept telling the Doctors what was happening and they didn’t listen to me. They thought I was a menopausal histerical woman with too much time on my hands. Truth be told I didn’t have a good Doctor. I switched to another Doctor and she was mad. She sent me to the Rheumatologist immediately. Hence I was on prednisone for over a year, methotrexate, etc. I think the thing that hurt the worst besides the physical pain was that no one could see why I hurt. Eventually blood tests and swollen joints were proof. I felt so all alone because I knew something awful was going on with my body but it took too long to prove it. I feel for anyone who has RA.

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  • March 21, 2013 at 1:46 pm
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    Wow, all these stories make me feel there is hope and I will find and answer. I am a mom of twin boys, very active, served in the military as a mechanic, and still work on airplanes. Been turning wrenches for seven years. When I joined I was out for two weeks cause my legs swelled so bad I could wear shoes, and covered in bruises. I had my boys a little over a year after. I went from doctor to doctor for pelvic and hip pain. Exams, test, blood, and the stress, experimental surgeries. Nothing was found and overload of Motrin that’s their specialty. Well after I got out of the service I had enough, I went to a doc who did free xrays. I have spondlyothesis, L5 is slipping of S1, and eventually need spine fusion. But still have hip pain, now I have been diagnosed with raynauds disease, bad blood circulation in my hands and feet. My hands swell and turn bright red like a tomato at any hard work, they can turn purple, as well as numb pain dropping things, and cramping. But now I have been told no carpal tunnel, so I am in waiting to see a rheumatologist. I’m to the point where I just want an answer, I don’t want RA but it would explained much that is left unanswered. Explains night sweats hand hips pelvic bowel problems everything fatigue. All the signs under the sun and just need an answer….

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  • September 15, 2013 at 10:13 pm
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    Hi i have been suffering for a while now and i think i am loosing my mind. I live in pennsylvania in the usa. It started with injuring my left shoulder. since then i was made to endure physical therapy. my body kept of feeling worse. I finally got a second arthogram MRI which indicates there iare no tears nothing wrong with my rotator cuff. My shoulder would swell and become red and hot to the touch. i was given prednisone and since then the swelling has not returned but the pain and spasms are increasing. my whole hand goes numb from time to time. now all my joints hurt and sometime pop when i move them. my back hurts something terrible sometimes and both my back and neck feels as if they will not support the weight of by head and body.

    My blood work came back negative for RA, but my SED rate is high. i am tol i have mild aenemia and my thyroid is underfunctioning a wee bit. my body sometimes feel like its on fire centered around my joints but i have no temp on the thermometer and my joints are not visibly swollen. the last symptom to emerge is the pain around my rib cage. it feels as if I did a whole bunch of sit ups or someone used my rib as a punching bag. I feel as if i am loosing my mind and no one can give me any answers. the pain is sometimes intolerable. Can anyone shed any light?

    PS My last doctors appointment I sat in the parking lot and criued. I cried because the doctor was awful and argued with me about my symptoms. i cried because i felt so alone. i cried because i am begining to wonder if the symptoms are in my head. as i type my fingers have begun to hurt. i just need some help…

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    • September 17, 2013 at 7:58 am
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      hi Melodia, the symptoms you describe sound typical for rheumatoid – but sometimes a diagnosis takes a while to be clear. There is not a blood test that can show whether you have it, especially early on. One third of patients have negative blood tests for the tests we have now.
      The rib pain might be this: http://www.rawarrior.com/chest-pain-in-rheumatoid-arthritis-costochondritis-anyone/
      I’m sorry about the crying in the car – I can’t tell you how many people have said the same thing – many. You described exactly how it is for many of us – that’s the reason for the work of this site. Don’t give up trying to find a doctor who will help you with your symptoms instead of argue with you about them.

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      • September 17, 2013 at 7:11 pm
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        Thank you so much for your response. Yesterday my doctor says he now thinks I have fibromyalgia and he thinks the pain in my left shoulder is from my neck. so here we go exrays and MRIs for my neck and some low dose treatments for fibromyalgia. I wish for just 1 pain free minute, just one.

        I just feel like screaming because no one seem to hear me…and yes the article about my rib cage seems just right! It was so painful when i breathe. It has now subsided. I freally fear that I will keep going from doc to doc for the next five years or more, while trying to live with this pain.

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  • November 25, 2013 at 4:01 pm
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    I just want to tell everyone here to do an elimination diet – a strict one where you eat brown rice, vegetables (no nightshades), Fruit (no citrus, includes bananas, and if you can’t take it a full seven days add organic turkey to the diet. If you’re RA is food allergy related you will get a big improvement in about 7 days. You can then try dairy, see if your symptoms flare again, waith 3-4 days reintroduce gluten, see if symptoms worsen, etc. RA is often related to leaky gut and irritation/inflammation in intestines – heal the intestines where 70% of immune system resides, and it will help body to stop attacking tissues. Please try this – what have you got to lose?

    Reply
  • March 14, 2014 at 6:49 pm
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    Hello all, I’m new to this forum and newly diagnosed with psoriatic arthritis. All my tests were negative and I never really had severe psoriasis, but I think the rheumatologist could definitely be right about this being arthritis. I’m 25 and just worried that I don’t have the right diagnosis and wondering if anyone here had ONLY tendon pain and no bone pain. I got bilateral wrist pain at age 16 that lasted three years and was aweful. A year ago, at 24, I got tendonitis in my left foot and have had to drop school and work because it’s just not healing. Now I’m getting full blown rib pain and knee pain, but it feels more like the muscles surrounding them than the bones. Does this sound familiar to anyone? I am actually HOPEFUL that it’s arthritis and not something else, because it would mean we’re on the right track. I just started methotrexate a week ago and had some good days but now today I’m so stiff again I can barely get around my house. So if anyone has had any success with treatments for issues like this, or thinks that this sounds like arthritis, please let me know! I’m very worried at 25 about what my life is going to be like and need to talk to someone who’s been there and gotten better. Thanks for reading this!

    Reply
    • October 15, 2014 at 11:46 pm
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      Niah, the symptoms of ribs, knees, tendons, and extreme stiffness that you mention are all common symptoms of rheumatoid or could possibly be from psoriatic arthritis too. I hope the methotrexate continued to help or that your doc is helping you find something to improve your symptoms.

      Reply
  • May 22, 2014 at 7:01 am
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    Hi, Have everything of the same, except that I AM ana positive and that scares me. My doc thinks I contracted it from years of using adrenaline and prednisone for inherited asthma and allergies. So it’s just part of the whole package which is me. I do not have a soft natured husband. Yesterday I could hardly get up – I would call it a systemic attack of RA, i couldn’t face the world and come evening he simply said: So what’s for dinner. And I took my wary bones and cooked him a steak and chips and at that moment was befallen with such anger. He’s not all bad, but he is an athlete and born with perfect genes and sickness irks him. I feel I need to get away from him for a week only just to get better, but being married for 40 years (straight out of school) he is more dependent on me than I am on him. But I could do with some ocean air and a bit of tlc. My body is so in trouble and you’re right, doc’s are not all sympathetic and everything’s a bother. Thanks for great post

    Reply
  • August 26, 2014 at 3:09 pm
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    I feel like this every day I can’t handle the pain & have thought of ending my life. I’m too depressed to seek anymore help tired of seems doctors

    Reply
  • December 3, 2014 at 9:11 am
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    These stories validate how I feel! makes me cry to know that am not crazy! I was diagnosed with RA in 2006 and I have very rare days I feel good.
    But noone understands …..its such a fickle disease.
    but I deal with it as best I can.

    god bless these women! I pray for them to have more good days.

    Reply
  • October 3, 2015 at 1:34 pm
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    Hi Vicki,

    Thanks for your story. I was diagnosed by my rheumatologist w/ sero negative ra this week. It has been a very painful and difficult 6 months. I especially understand how a spouse does not always understand the pain associated w/ Ra.

    Reply
  • August 20, 2016 at 1:51 pm
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    Thanks for stories and posts. Very helpful. They have reminded me that i should not give up in my belief that i have now acquired something more than sjogrens. Problem here is that ive had sjogrens since age 35. Im now 55 and everything is blamed on sjogrens, which for tnose who dont know can produce multi organ and systemic symptoms. However, ive developed bilateral joint pains that are different now, knees, toes, shoulders, fingers. They are willing to order rf and anti ccp when i ask, so when those just came back negative they say “just” Shogrens.

    I was surprised to read here btw about night sweats. Ive been getting drenching sweats after not swearing for years- assumed it was menopause (no evidence of lymphoma).

    Hard to explain what happened with shoulders. First one landed me in er, and they said calcific tendonitis. But that was followed with red hot swelling of wrist which had them stumped and a migratory aretritis that lasted over a year. Recently (3 years after other shoukder) i had an trasound of shoulder and something happened that 4 docs so far have insisted iImpossibe- yet it happened. I dont know if was the sonogram itself or the positioning but it lead to excruciating shoulder pain wherw i coukd not move shoukder or go out or get dressed plus swelling, plus then got a fever from it. A few days later my elbow turned bright red and could not bend it. I was told coincidence, to tbe extent they believed me at all. So now am terrified of getting any more ultrasounds of joints- you would not believe how excruciating it was. . You just have to look at me funny a d my immune system seems to react to anything that’s looked at. Also tendonitis for years, hips, anklea, elbow, but assumed it was sjogrens and that part still nay be

    I shouldnt get started on doctor obstacles. At this point id be so much better off if i had my own prescription pad and ability to order tests. Its exhausting fighting medical ignorance and blatant stupidity- dont we have enuf to fight?

    I dont suppose anyone else had vad reaction to ultrasound? Woukd like to check toes and kbees for RA signs but very reluctant now- tho interestingly poster 2 also did not get diagnosed after those anyway

    Very curious to know what those 10 signs are that story teller 2 mentioned.

    Reply
  • August 20, 2016 at 1:53 pm
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    Ps quick thing on kbees. They both started burning like crazy. Would be too soon to show erosions on xrays. So how can i get evidence this is RA?

    Reply
  • March 19, 2017 at 1:09 pm
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    VICKY IVE HAD RA SINCE THE AGE OF 23 YRS .LIKE U IVE HAVE HAD PAIN IN MOST OF MY BODY FOR YRS .IM ON EMBREL COULDNT TAKE SOME DRUGS BUT TRIED MOST OVER THE YRS .IVE HAD A TOTAL ELBOW REPLACEMENT .TRIPLE FUSION IN LEFT FOOT AND HAND OPS .WRISTS ,NECK FUSED TO .BUT I CAN UNDERSTAND YOUR PAIN AND BEING MARRIED WITH THIS DISEASE .ITS HARD YOUR SELF EXTEEM GOES .YOUR TIRED ALL THE TIME AND YOUR SEX DRIVE WITH RA IS NIL CAUSE U JUST HAVE NO ENERGY FOR IT .SOME UNDERSTAND MANY DONT MY MARRIAGES ENDED CAUSE OF THE NONE UNDERSTANDING OUR PAINS .ID LIKE TO SAY IT GETS EASIER BUT IF YOURS IS AS BAD AS MINE IT DOESNT BUT YOU COPE AND LIVE WITH IT IN TIME .I HAVE A BRILLIANT DOCTOR AND CONSULTANT BUT KEEP AT IT AND TELL THEM ABOUT YOUR SWEATS .YOU NOW CAN GET MORPHINE PATCHES IF BAD THAT HELP .YOU CONTROL THE DOSAGES YOURSELF ASK ABOUT THEM IF IN TO MUCH PAIN .IVE LEARNED OVER THE YRS SPEAKING OVER LITTLE PAINS HELPS .

    Reply
  • October 24, 2017 at 4:48 am
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    So I am seriously considering medical marijuana for the relief of my pain.

    It’s been legalized here in the thumb state ( Michigan). And I see no other option as to why not.

    I wld not smoke just use edibles.

    The crazy side effects of the embrel humira, and other popular big pharma tested drugs .
    Frankly scares the beegeebees out of me.

    So I did press the office mngr for to see if their office would comply but alas they do not prescribe.

    So my friends stay tuned for further updates .
    My vocal and silent prayer to Jesus , his Angels Gabriel, Micheal, and Raffeual ?
    To continue to help me with this ra struggle !!

    Remember always question the answers

    Always question authority

    Take no crap from ignorant replies, people, corporations, policy’s, etc.

    Get to the truth as quickly as possible before they destroy the correct evidence.

    Have strong Faith. Stronger Willpower. And never give up. !
    Peace and Caution.

    Reply

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