Information & encouragement to fight RA
I am 35 years old have been diagnosed with Psoriatic Arthritis for 10 years, from Brisbane Australia. I read your blog daily and have never commented, because I feel like I am sneaking around in someone else’s house… This post hit me right in the heart… RA and PsA really are twins in so many ways…. I’m crying.. no-one ever gets it, no-one ever listens, no-one will ever know what I know or believe what I know is happening to my body.. it is slowly killing me day by day and all anyone ever does is treat some of my symptoms and dismiss most of the others. I just want someone to come and pick me up, say “it will be alright, I will take care of all of this for you” … Strangely we all pray for a cure or at least a way to turn it all off, but Comprehensive Care feels as though it too is just as far from our reach as the magical cure. How can I sit hear feeling all alone with this disease… and somehow this post makes me know that everyone of you are going through the same thing.
Dear Dionne, unfortunately many of us are going thru the same or very similar so we know. I can’t see you but I’ll be thinking about you this morning and hope someone near you will reach out or call.
Often I say the same things you say. Like, “will someone do something?” “is anything going to be done or will this pain and destruction just continue forever?”
Of course you’re welcome hear. These are sister diseases as we gradually untangle the threads of distinctions. One day some other RA patients will probably have a more specific diagnosis the way PsA does or AS – all were once mixed into the same pile. But there is a lot of variation in what is still called RA disease.
OMG….Dionne…….I am sitting here having a good cry. I could not have written my feelings any better. I have had FM for 5 years and I am 1 year into my RAD dx. I really like my rheumy, but I just entered tbe I don’t know what to do with hou” stage. She is not giving up on me, but told me this is a slow process and we are just in the beginning. I am so tired emotionally and physically….I know we need to stick together and be strong. I am sending you healing thoughts and gentle hugs.
Isn’t just so frustrating. It’s like no one really wants to help us! Don’t they get what suffering means? I guess not. I really feel for you because I totally experience the same thing.
I developed RA last year and it has been a real struggle but I am finally in my final semester of a family nurse practitioner program. Please pray for me that not only do I stay physically able to finish the program but that once I am certified I find a position where I can help other RA patients. I definitely can understand an RA’s patient pain and frustration as well as the grieving process. I have always believed the best health care provider is one who has been through the same experience and suffered the same pain.
Good luck Mary Jo! I know it must be hard work but you will help so many people!
Mary Jo, I am adding you to my prayer list. Absolutely you would be able to give great care to anyone with RA. Plus, I’m so tired of RA winning, I know you have worked so hard to do this, it’s time for you to come out on top. I had a NP who has MS, she gave me the best care. She is the one that treated whole body. I sure miss her!
Great article, Kelly! So true. I would just like to tell you about my insurance company’s new program. It’s called Accrodane Care. It’s a program for people that have cronic illnesses like RA. I have my own personal nurse I can call at any time 24/7. They call me every once in a while and visit with me about my RA. They give me advice and I have a list of things they want me to check with my Rheumy at my next appt. The nurse asked me questions like “what is your Rheumy doing to prevent heart disease?”, “have you had a bone scan.?”… They also send me news letters and the latest info about RA in the mail. They are there to help me with the “weird things” and help me find specialist in whatever help I need. I am so happy I have this service.
That is a fantastic step!! I wonder who is educating those nurses so they are not just social calls? Wow. Patients who ask for those things are often met with, “huh?” “Why?”
What a great post, Kelly! I have bilateral hip fractures due to taking Fosamax. When I complained to my rheumatologist about my hip pain, he ordered xrays and then an MRI. He caught the fractures, said they were consistant with those seen with prolonged Fosamax use, and sent me to my orthopedic dr. The ortho, who I have seen for years, does not do surgeries anymore so I was referred to someone else in the practice. Multiple times I asked her if my records were being sent to my rheumatologist and to my PCP. “Of course” she said. Well…I went to my PCP with my daughter for an issue she was having. My PCP was shocked to see me using a walker and had no idea I had hip fractures or had surgery! Then, when trying to coordinate my Remicade infusion between hip surgeries (I have had the left side done, the right to be done in about 3 more weeks)he had no idea I had gotten the surgery done. I had to call the orthopedic dr again to have records sent to both drs. How important is this?? I can’t have Remicade if I just had surgery and have another upcoming one! From now on, I will not rely on one Dr to send reports to another. Even if confirmed that they were sent. I will take the reports myself! There was no communication from the orthopedic dr. My PCP and rheumy do well together and so does my original orthopedic dr. So I just assumed….!
great points and great reasons for electronic records, Phyllis. That we can access as needed to help the process along and look for errors, etc!
Thank you for sharing. As patients, we know that all of these symptoms overlap and have to somehow be connected, so we definitely need to have doctors that understand that and are taught to treat the whole patient. I am one person. I am not separate diseases. I did not go to school for this – isn’t there somebody more qualified than me to juggle this care? At least can we get somekind of computer technology comunication amongst the specialists?
I was recently diagnosed and have already begun to see some of these issues. Someone needs to be coordinating my medical care, but it seems that job falls to me. (Nevermind that I already have a full time job I need to keep and just having RA is like a full time job all it’s own!)
I currently have a GP, an endocrinologist, and my nice rheumy who all want lab work done at various times. Could we coordinate all that? Maybe piggyback one lab order onto another so that I don’t have to have multiple blood draws with multiple labs and get multiple insurance bills for my portion? No. That would be far too simple.
Thanks so much for providing all this support and information. I’ve been lurking here for quite a while, and I’m thrilled you’re here.
Good to meet you Snow. Thanks for speaking up. Logic does not seem to have much to do with it, does it?
As for the lab thing, I’ve been known to tell them to hand me the lab order and I’ll “go get my lab soon when I have orders in my hand from dr so & so too” – Then I have the lab add the other dr’s names to all the orders so everyone gets the results. Of course I pick them up myself too for several reasons. AND, not to make it sound like there are simple answers (there’s often not), I get a Standing Order for labs whenever possible and keep it in my car. I leave a copy of it at the lab near my house.
I am so glad that there is someone that feels the same way that I do. I’ve been saying for YEARS that RA requires whole body treatment. That means mind, body and spirit in addition to the medical side. I have a DR for everything because my rheumy has now said that he only treats the RA, for everything else you need to see your GP. Then I go see my GP & he refers me elsewhere…it’s a mess. Does the rheumatologist think that my depression has nothing to do with my RA? or my sleep issues are in no way related as well?
I think RA should be treated in a Wellness type setting. A setting that includes a nutritionist, a place for therapy & support groups, a place that allows for alternative medicine (acupuncture, cupping, massage therapy, etc.), exercise programs, gentle yoga…you get the picture. They have wellness centers for cancer patients (and I by no means want to take anything away from cancer patients) but I think RA patients deserve to have this as an option as well.
I went to nursing school and completed a year but didn’t finish (I did complete my Associate of Science). But I’ve always been an information junkie so I’ve been very active in my treatment…demanding at times. There are no support groups here for RA so I am planning on starting one. Beyond that I have decided to go back to school to major in Psychology. My 10 yr plan is to start a local non profit for RA patients & their families and to start a patient advocacy program. Currently there is not a specific education layout to be a patient advocate so I know I will need more than a psychology degree but I believe this is what I was put here to do. Ultimately, my dream would be to have a fully functional wellness center in my area before I leave this earth.
Oh, I also wanted to mention….the Dr that helps me the most….my chiropractor. He is smart, educated and above all…he listens to me.
Sorry if I babbled on a bit but this subject is so VERY near and dear to me.
Good points to bring up Cheryl. I can see why you’d like a dr like your chiropractor – I think listening to the patient is STEP 1, so he will inevitably help you more than those who don’t listen as much.
Most rheumatologists in the US treat RA by prescription medicines and sometimes with joint injections. Non-joint symptoms related to RA or secondary diagnoses are kind of no-man’s-land. Some rheumatologists will discuss and some will not. I could go on and on about examples from patients, but instead I’ll write more posts on this tag to document research about what ought to be done. In my own case, I’ll say 3 of my specialists could not decide which one could appropriately diagnose my Sjogrens a couple years ago. It was a very strange he-said-she-said thing. It was the same with pain meds, dexa scan, spine mri’s, and other things. When I asked, the rheumatologist was not the one to act first. I rely on my GP for somethings who knows little about RA, but has acted with concern for me.
Please email me if you start a group so I can help advertise it & add it to our list of groups for people who are searching. Also I recommend contacting http://arthritisintropsective.org for assistance with that!
My doctors are all in a health system where they all share the same computer system. So my Rheumy can see lab results ordered by my GP, etc. That didn’t stop me from being referred to my dentist for jaw pain although I’ve always assumed it came from RA. Unlike some of the other posters, I’m so done with testing and try to put of labs, x-rays, etc. I guess because I’ve had so many with not a lot of helpful results. My enbrel has been working great for 12 yrs., but I keep having foot pain that I think is plantar fasciitis which may or may not be RA related. The Rheumy never considers any other possibilities. He just wants to add methotrexate, but I don’t want to because my other joints are fine. I guess what I’m saying is “So I should be hoping for better than this?” I’ve been settling for this so long because the Enbrel finally does something for me.
Catherine, my foot pain was diagnosed as sesamoiditis, food for thought. I also use tape to wrap it…KTTape, you can buy it at the sports stores and learn how to use it on their web site or on YouTube…physical therapists…it might help a bit. Good luck.
Kelly we really could use nurse practioners who specialize in autoimmune disorders. Once we got NP’s in gyn , peds and ICU, it has really helped, especially gyn, they can spend so much more time with a patient.
thanks again for your hard work and dedication, I know it’s not easy, it is appreciated!
What a timely piece. I was recently concerned with some pain that I had in my ear/jaw area. Being treated for RA with a biologic I wasn’t sure if I had developed an ear infection (which I had never had in my life) or if I was having TMJ joint pain. I decided a trip to my PCP was in order just to rule out infection and to get a look-see. Now, nine months ago when I couldn’t bear the joint pain (hands, wrists, ankles, toes) any longer I was a good patient and started at my PCP and got my referral to my current Rheum who did diagnose me with RA and begin treatment. Now, back to the present. I see my PCP, who I love, and he says, ‘did you actually get diagnosed with RA?’. I was flabbergasted. Mind you, I go to a regional health site where my PCP sits one floor below my Rheum and all of my info is electronic. I could go to a clinic 100 miles away and my PCP would see it. I was disappointed that he didn’t know. But, maybe I expect too much. However, this article speaks to my disappointment – if my care team are already connected, what is being lost in translation? Thank you, Kelly for always pushing the boundaries and making us demand better care.
Good relevant examples Amanda. Thank you. And I hope your jaw/ ear pain gets better.
Gee…a whole body doctor!?! Somewhere over the rainbow, maybe…
Besides joint pain, I have a lot of muscle pain. I have been told RA doesn’t cause muscle pain, but I think that’s baloney. But then, I’m not “trained” in the fine art of RAD care so what do I know (ha).
Seriously, I have a decent doctor, but he’s way over-worked and I see him maybe 2 times a year. I see the PA the other 2 times I get to have an appointment. My infusion nurse, Molly, is the one who “hooked” me up with a fantastic neurosurgeon for my back and it was he who discovered how horrible my whole back is. That doctor was as caring as any I’ve ever seen, esp. for as busy as he is.
He was the one who told me that RAD didn’t cause my back problems, bur accelerated them. So, no more prednisone for me!
I too, pick up all lab work, x-rays etc. and make sure all the docs have a copy. I am learning NOT to trust the system. My RA doc says that the other offices may fax them over, but they get lost in the shuffle ( it’s a largish practice)and who knows WHERE they are.
I guess I’m babbling, but it would really be nice to have someone who could sit down and actually explain what this symptom or that means and if it’s RAD or something else.
Thank-you Kelly, for the effort you put in to bring us all this info. There doesn’t seem to be any where else we can go. You are a God-sent gift to all of us.
This is so good to hear, honestly I have probably asked 80% of these questions myself. Thanks for caring.
Great job Kelly, thank you so much for the time you give us.
I am really fighting fatigue right now. And that just doesn’t seem like an appropriate name for what I am feeling. I have been up for a little more than an hour after getting about eight hours of sleep and I am sitting here fighting sleep like crazy. This happens most days, several times a day. I would just crawl back in bed, but what kind of life is that?? Plus I am in college (distance learning) with lessons and tests due weekly, tons of reading to do.
So far the only help I have received from the doctors for this was an anti depressant. Couldn’t take it, caused really bad headaches with pressure behind my eyes. Since this is a known symptom of both RAD and FM why is there not a treatment in place to combat it???
Well I guess I better get the toothpicks out to prop my eyes open, Psychology awaits!
Becky…I am a teacher and have the same problem with fatigue…I take Nuvigil/Provigil (I have taken both) to combat fatigue…It is a stimulant medication usually prescribed for sleep apnea but works great for RAD fatigue too!!! The only problem is the expense…Most insurances won’t cover because it is off-label for RAD fatigue…I buy 10 pills a month for $160 and cut them in half to last 20 workdays a month…I don’t take them on weekends unless I have something I must do or attend…You may want to read about it online and talk to your doctor about it…
I did just see my Primary care DR, he is putting me on Prozac for the energy boost it gives you. Go figure. Well, I am desperate, so I will give it a try. I go to the VA so don’t thin k the fact about it being off-label will matter to them. They just make you try what ever is cheaper first then if that doesn’t work, they might let you have the more expensive drug.
I guess we’ll all wind up with huge caches of doctors…let’s see… GP, rheumy, at least 5 orthopedic docs, cardiologists, endocrinologists, periodontal, some pulmo…what else am I forgetting? Dermo….
Becky… A couple things, try a different antidepressant, they have different side effects. Anytime I want to rest rest rest, I usually am starting a flare or getting another darn virus. I also treat the fibro, with Savella , it has helped a little bit. And thank my iPad everyday for sitting on my lap or sideways,i could never sit at the computer, and the pad saves everhing when I fall asleep . I hope you feel better, spring is coming if you can get outside for 10 minutes a day that helps too…The vitamin D, always better when it’s the real thing and not a vitamin supplement…sometimes it’s the easy stuff that fixes things. Stay positive”
Thanks Kathi! Yes, they are changing out the Effexor for Prozac. I’ll give it a try, hate feeling the way I do.
I love this about this site, so many helpful folks! I know that unfortunately many have already been down this road but they take what they have learned and pass it on to others. And all of us know that while we hate for someone else to have this damn disease, it means so much to know someone else that has experienced some of the same things you do.
Kelly–This post hits the nail on the head! I’ve been left wondering, so many times, why the doctor I am seeing has no idea how RA could be involved in the problem about which I am seeing him/her. Or my rheumatologist doesn’t treat an RA-related problem–but I can’t find out who does!
Example–my jaw went crazy with pain last year. Saw my dentist, who sent me to a tmj specialist who told me he had no idea how ra impacted the jaw (really?) Called my rheumatologist who never returned my call–later found it it was because he doesn’t “usually deal with the jaw.” Went to after hours on a weekend–was told it was probably my ra, but no pain relief there (wanted my ear checked b/c the pain was radiating) b/c I have ra and said to see “my regular prescriber.” Finally got a kenelog shot over a week later, which finally provided some relief. Chiropractor worked on my jaw for several weeks and finally got comfortable enough to eat again.
I have similar stories with a cardiologist and a pulmonologist–and I still don’t have the full diagnosis on those problems. My rheumatologist knew more about my lung problem than the young pulmonologist who treated me recently (he was skeptical that I even had a problem.) But it was my gp who finally actually explained to me what they did know.
I still haven’t come to the end of my search for what to do about a shingles outbreak that has become recurring after any immune suppression. That kenelong shot that fixed my jaw brought on another round. And I’ve stopped Orencia b/c of the outbreaks. I’ve probably had shingles at least 9 times in the last 2 years. This is a growing problem (I am told)in the world of biologics, and I am now about to see an infectious disease specialist. But there’s no standard procedure for those of us who deal with this problem.
Who, indeed, treats us when RA becomes systemic or the meds cause unusual side effects?
Thanks again for all you do.
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I HAVE HAD RA FOR FIVE YEARS AND HAVE TRIED ALL THE TNF DRUGS HUMIRA, CIMZA, ETC., METHYLTRXATE, AND HAVE BEEN ON PREDNISONE FOR THE ENTIRE TIME. I RECENTELY WENT TO A DIFFERENT RHEUMY DOC AND SINCE EVERYTHING ELSE FAILED – ASKED AFTER ME THINKING ABOUT IT AND RESEARCHING IT IF I WANTED TO TRY RITUXAN. SO I DECIDED I WOULD. THERE ARE INITIALLY 2 TREATMENTS WITH THE 2ND ONE BEING A COUPLE OF WEEKS AFTER THE 1ST. THE FIRST IV RITUXAN TOOK 7 HOURS WITH PRIOR IV DOSES OF STERIODS AND BENADRYL. I DURING THE INFUSION HAD AN ITCHY FEELING IN MY THROAT AND STARTED TO EXPERIENCE SOME MOUTH SWELLING. THEY STOPPED THE INFUSTION AND GAVE ME ADDITIONAL BENADRYL, THEN AFTER AN HOUR WHEN I FELT OK THEY RESTARTED THE INFUSION SLOWLY AND I TOLERATED IT OK. THE 2ND INFUSTION I FELT FINE THE ENTIRE TIME UNTIL I WENT HOME AND WAS HOME ABOUT 2 HOURS AND THE ENTIRE LAYER OF SKIN ON MY TOP PALLET OF MY MOUTH CAME OFF AND WHEN I LOOKED IN THE MIRROR I HAD THESE RED SORES THAT WERE BLOODY LOOKING. I FREAKED OUT CALLED THE INFUSION NURSE AND SHE CALLED MY RA DOC. HE CALLED ME IMMEDIATELY WAS VERY CONCERNED AND WAS VERY WORRIED IF I WAS BREATHING OK AND ABLE TO SWALLOW. I SAW HIM FIRST THING IN THE MORNING. HE HAD NEVER SEEN A REACTION LIKE THAT AND HAD TO REPORT IT TO THE FDA AND TALK TO THE DRUG REP. AND HIS COLLEAGES. MY NEXT INFUSTION IS TO BE IN SIX MONTHS. HE DOES NOT KNOW IF HE IS GOING TO DO IT BECAUSE OF THE REACTIONS I HAD. HE SAID I AM NOT INTO KILLING MY PATIENTS. BUT I FEEL LIKE IT HAS HELPED ME. I DONT FEEL LIKE I HAVE THE FLU EVERYDAY OR THAT MY JOINTS ARE ON FIRE. I FEEL A LOT OF IMPROVEMENT. I HAVE OSTEO IN MY KNEES AND HANDS. ME KNEES STIL HURT AND THE JOINTS IN MY HANDS ARE TOTALLY NECROTIC SO I STILL HAVE PAIN, MY RA DOC SUGGESTED SURGERY AND FUSING MY JOINTS IN MY HANDS. HE THINKS I SHOULD GO BACK TO WORK, I HAVE BEEN OUT OF WORK FOR A YEAR BECAUSE I HURT SO BAD FROM THE PAIN I WOULD BREAK DOWN AND CRY EVERYDAY. HE FEELS THAT IF I AM DOING SOMETHING I WILL NOT BE THINKING ABOUT THE PAIN. I FEEL BETTER BUT I DONT KNOW HOW I COULD WORK BECAUSE I STILL HAVE SEVERE FATIGUE AND HAVE PERPHERAL NEUROPATHY IN BOTH FEET. I HAVE A DIFFICULT TIME WALKING AND LOSE MY BALANCE AND HAVE FALLEN SEVERAL TIMES. I WOULD LIKE TO GO BACK TO WORK BECAUSED I LOVED MY JOB AND FINANCIALLY IT IS VERY HARD LIVING ON DISABALIY. BUT MY RA DOC DOES NOT UNDERSTAND THAT AND IF HE REFUSED TO GIVE MY THE RITUXAN I DONT STAND A CHANCE OF EVEN TRING TO HAVE SOME KIND OF A LIFE, BECAUSE BEFORE THE RITUXAN I WAS IN SO MUCH PAIN I REALLY DIDNT THINK LIFE WAS WORTH IT ANYMORE. IF ANYONE HAS ANY IDEA OF WHAT TO DO OR HAS HAD RITUXAN PLEASE LET ME KNOW. THE NURSE WHO DID MY INFUSION SAID THAT ALL HER PATIENTS WORK AND FEEL GREAT AFTER THE 2 INFUSIONS. I FEEL BETTER BUT NOT GREAT. PLEASE HELP – IS SOMETHING WRONG WITH ME THAT I DONT FELL 100%??
I totally agree with all the comments, I have grown tired of being treated like I’m lazy when fatigued or I don’t look sick or disabled, it gets so infuriating! I have had issues with asthma for years as well as RA and concerns about lung problems bother me, not that I feel like I get listened to, in April have an with new rheumatologist so fingers crossd
Whole body help would be a miracle and not likely! My 2 month or so pain has had no relief and my RA doc took x-rays and found nothing. My current GP said it is rhumatoid and my RA doc referrd me to the GP at his building. Still won’t get to see the new GP for another month ands I have waited 2 months. Nothing helps the pain in my back near my shoulder blades, nor the pain around my rib cage which cause me to have difficulty in standing. It is a come and go pain, and have no other symptons associated w/the pain. My current RA doc even had my records wrong and did not seem pleased when I corrected him. I feel neglected and don’t know what to do. He urged me to continue the Humira with catch up doses, but if he doesn’t know what is wrong, how can I take something like that? And he and my pharmacist conflict on my pred meds and how to take them, which could cause me more harm-thanks doc! I follow what I believe, and am convinced I may have to travel over 200 miles to get back to my orininal RA doc that seemed to care, if I could get in with him. My previous GP and RA doc were my whole body team and now I have nothing to rely on living in the wildnerness in my area. Whole body would be helpful, but not here. Thanks Kelly for all the wonderful info and support.
Chinese medicine has perhaps “the answer” to RDA in combination with the GAP diet. Chemotherapy for RDA is like any other form of chemo. It is poison and jeopardizes all of our other systems. Our western medical mentality needs to open itself up to what the Chinese practitioners have been doing for thousands and thousands of years.
I guess I’ll have to search around for a Chinese medicine practitioner. I’ve taken all the poisons for 12 years. My liver enzymes are increased, and my kidneys are failing. I’m going to a nephrologist next week. I don’t know whether quitting my meds (helloooo stiff, painful joints), adding more meds, dialysis. considering a transplant, or being left to time as various tests are administered will be the result. I’m scared, because I can feel myself getting more and more fatigued, my mind less acute, and my urine output less and less (I’m drinking loads of water and other fluids).
Elizabeth I’m so sorry that’s going on. We are falling apart aren’t we? Sending love & much empathy.
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