Does Each Joint Count with Rheumatoid Arthritis?
In the morning, I’m going to see the pain doc again about my neck, the one who took the place of Sir Topham Head when he moved away. They claim to only treat back pain, but that might be a good thing.
When I was first diagnosed with RA, I met a woman at my church who had RA in her wrists… only. Seriously, being over sixty, she luckily had a milder version of the disease. Rheumatoid Arthritis is a heterogeneous disease that can be mild, moderate, or severely active (full-blown). Of course, she could not relate to or even believe what I told her about having every joint affected.
But both of the two rheumatologists I’ve had (2.5 – 3 years each) understood and documented that my disease is severely active and affects me systemically. So every joint stays inflamed and I live with constitutional symptoms like daily fevers.
Why are there many joints that have never been treated or examined?
With the rheumatologists, there hasn’t ever been time for me to explain about the specific symptoms in each joint. So, I focused on trying to provide a clear picture of what’s going on in my case: inflammation in so many joints at the same time. I realize that’s not how it is in every case (possibly about one-third of RA), but that shouldn’t matter.
It worries me that no one has ever examined my knees, feet, or cervical spine. They are the worst. Along with my shoulders. My shoulders have recently been sort-of “examined” in a cursory, lax way that seemed ridiculous to me and family members who know how little use of them and how much pain I’ve had over the past 6.5 years.
“Dr. Smart” had never looked at my knees, but once I brought a stack of photos I had printed to show what goes on with my joints between appointments. When I flipped through the photos, doc grabbed one of a Baker’s cyst and said, “This is a Baker’s cyst. It can go in your chart. You are allowed one photo in your chart.”
So my Baker’s cysts were documented. But nothing was ever done.
This is one area where I’ve tried hard, but I feel like a failure as a patient. I’ve not been able to get a doctor to pay any attention to specific joints.
I know I’m NOT alone and this is NOT about my knees
This is not about me or my knees. Patients tell us getting care for a specific joint is a problem. Here’s Kay’s example from January:
Reminds me how I sometimes feel a sort of healthcare envy. I know I get it when my husband has say…an injured shoulder. He gets all these tests, he gets therapy paid for, he gets morphine for pain and a special cooler to ice his arm with. Meanwhile here I am, hauling this sorry limb around all day, every day, same shoulder – but where is the care? It is just as useless and just as painful, but because I have RA… all the doctors have put me in a box and figured “she’s getting the required treatment” and nothing more is done for me. You hear about people getting these extraordinary treatments that cost exorbitantly …and none are offered to you – or to get them you have to yell loud and long until someone hears you. All you want is to lay down on some hospital bed somewhere and have them take it all away because the fight is sucked out of you. I’ve watched lots of patients describe this same problem. If they have lots of joints inflamed, no one pays much attention. True systemic treatment would be the answer, of course, and we try treatments faithfully.
Someone Tweeted about this problem a while back and I mentioned how my knees aren’t treated. Dr. Carlo Caballero replied the answer is to control the disease. What if we’ve tried every treatment available?
Communication strategy with Rheumatoid Arthritis joints and care
What if a single joint or only a couple of joints are mentioned? How does the discussion go? I’ve been curious for a long time whether that works.
What do you think of this strategy? Have you tried discussing only one joint? Did it work?
What about consulting an orthopedist or other specialist about affected joints when rheumatologists don’t help? It makes sense to me.
Since the cervical spine RA can be dangerous and it occurs so commonly, I’ve often recommended people consult a neurosurgeon or get second opinions on imaging. If we only talk about my cervical spine tomorrow, maybe this will be the first time that my neck will be examined. I hope so.
Heartbreaking yet true coincidence
I hugged my beautiful friend Carla this summer, remembering when her mom died of RA because the RA in her neck was neglected by doctors in 2005 shortly before my diagnosis. Tonight I read Tanya’s blog on her cervical spine tests where she talked about her own mom who died of RA that same year. I knew the story already since I’ve talked with Tanya about it before. I cried as I thought about Carla and dozens of others who have told me similar stories.
Together, Tanya, Carla, and all of us will change the inadequate understanding and treatment of Rheumatoid Disease whether it affects the spine, knees, all joints, or just a wrist.
Recommended reading
- Death by Rheumatoid Arthritis: Possible and Preventable
- Can Rheumatoid Arthritis Affect the Spine?
- I Want My Life Back
- Can We Treat the Whole Person or at Least the Whole Disease?
I would say keep looking for a new rheumy who takes you seriously and has the time to truly examine and listen to you. Do you live near a teaching hospitsl? If so you can often find exceptional doctors there. I have been bkessed that my rheumy of almost 20 yrs really listens and is quick to send me to see a specialist whenever needed. He insists that I see a different orthopedic dr for each joint as well so that they specialize in that one joint only and will give me the individualized attention I need. Don’t give up…keep fighting to be heard. Ask around for others opinions on who they woukd see. I particularly like to ask drs if they were to get RA which dr would they go to. Also check drs ratings on computer for any complaints. I wish you the best at your appointment today. Courage to not leave drs ofgice until he/she listend yo and addresses all of your concerns. Stay Strong!
Or thumbs. I’m heading to a hand surgeon for that. I told my rheumatologist that my cousin died from PsA. She argued with me. I said her doctors even said so. She still argued with me. Arthritis doesn’t kill people she said. You should be able to expect better from a doctor!
I read Tanya’s blog too. I am sorry to hear of so much loss, but it goes to prove how serious RD is. How do we get all the doctors to understand that? It’s things like this that make me doubt a cure is in sight. They know way less than they think they do about autoimmune diseases. One of the newest things I guess is lack of vitamin d being a contributor. I was raised with a pool. I got plenty of vitamin d and continued to be a sun worshipper in my 20’s and I am now low in vitamin d. They are missing something….
Systemic means almost all systems can be affected..Large joints, knees, hips,spine, ,elbows,shoulders, wrists and ankles as well as fingers and toes have all been involved at some point or other My specialist doesn’t seem to help me very much. He does not seem to be taking me very seriously at all.. I believe they figure my life at 68 is almost over anyway so I am not a priority. I truly believe this.
If I were 35 or 12 extra measures would be taken to help me.. My Doctor doesn’t even try to explain anything to me.. he just increases my Meds and tells me to go away for 3 months.He isn’t interested in what my heart specialist is doing for me and I have just learned ( here) that there is a connection between the two conditions.
I have to say I am disgusted with the lack of concern my Rheumatologist is showing.Informations from his is no existant.. I need hand splints and I need nodules removed that are interferring with function and I need to know how to access devises and therapies and find no information available ..I feel sometimes like I am swimming in a lake of complaints and I am so tired of trying to tread water.
Patricia I’m very sorry that anyone gave you the feeling it doesn’t matter at 68. Of course it matters. Many of us are in our 20’s, 30’s, or 40’s and we are treated the same way, so I’ve come to realize it’s something lacking in their training. What a perfect description you give about trying to tread water in the lake of complaints without the help you need.
Seriously only ONE photo in your chart? I give my rheumy pictures every other visit. It’s a good way of documenting what’s happening in between visits, and so many symptoms come and go.
Doc told us it was a rule for their practice. I remember just “accepting” it like we accepted so many other things we didn’t like because I was so grateful to be treated at all instead of dismissed.
I was just released from the hospital last week b/c I could not walk. I had full blown RA in my knees and the pain was worse than labor. I was left there for 5 days – no one knew what to do with me. Know what answer I got? “You have fibro” and they took away all pain medicine. I am thrilled to report due to a bunch of horrible steroids I am walking again, but I too have fevers everyday. It seems like a hopeless battle, I am on my 4th Rheumatologist. I guess what I am trying to say is I could have written this blog to a “T”! I FEEL YOUR PAIN!
Keep blogging, I love to read what you have to say.
Dear Amanda,
I’m so sorry your knees are so bad. That business of blaming it on one syndrome or other is such a useless dead end & makes no sense. Joint pain is a symptom of RA, not fibromyalgia syndrome. Fevers are classic RA, a symptom of systemic inflammation. And steroids are an anti-inflammatory / RA treatment so it’s kind of obvious what’s going on. I hope you find someone who knows his/her stuff & listens to patients. One thing that’s so crazy is that if you had been in hospital for that knee flare 30 yrs ago, they would know that giving you rest and steroids was the best way to calm the flare. Of course the systemic doses then were way too high, but at least they didn’t take away your meds and act like it was in your head…
I have been sent for Xrays of the cervical spine and found out is is medium subluxed. Not bad even to put up a big flag, but enough that I need to be careful and wear a neck collar sometimes, and the anesthetist last time was careful.
It seems to take a “campaign” to get something else to happen. I got my GP to send me to a cardiologist at the same hospital as the rheumatologist and found out my CV health is good except the heart is “deconditioned” (not enough exercise)
The Arthritis Society in Canada takes self-referrals so you can get physio advice, see an OT and get splints at cost and see a social worker as well
SO that’s not too bad
I have actually had more problems with my neck than any other joint. I actually started having problems with my neck in 6th grade, but they didn’t give me any suggestions besides Physical Therapy. When that didn’t work I lived with the pain, without any treatment or medication because no one wanted to give a 12 year old pain medicine without a diagnosis. It wasn’t until my wrist wouldn’t move 5 years later that I was diagnosed. Even still nothing is done for my neck (or my shoulders know too) – because it has been hurt for so long my RA meds don’t help my neck as much as other joints – and it has been the most frustrating part of my journey with RA. It is worth it to try PT because sometimes it does help at least a little, but other than that I have no suggestions. If you find a good solution for your neck/shoulders please let us know!
I will never use the word fortunate when it comes to RA or the cervical spine. I will say that my cervical spine problems started before the RA diagnosis. I have had an un-successful C4-C7 cervical fusion and will not have any further surgery, but my Neurologist/pain management dr is the only one who treats my neck and spine.
I would suggest finding a good Neuro dr for anybody with neck and spine issues since like everybody else here, my Rheumy ignores that area. Just a suggestion.
Wishing you much luck for some relief. I can honestly say I would not be able to make it through the day without my Neuro’s pain management help, and constant testing to monitor the destruction in my spine.
Am on Palaquin and Metrotaxate. Still have numerous problems with stiffness and and terrible pains during flair ups.
Read on the net about the Road Back Foundation. And about a book by Henry Scammell, Athritis breaktrough. It is believed that antibiotics can do a lot of good for RA patients as RA might be caused by a virus. Minocycline is an antibiotic that is used and has good reults. Seems an area that is being overlooked by doctors?
Anyone knows more about this?
Thank you
Kees
Thanks for this blog post Kelly! My Rheum experiences have been similar. I have learned to only share with my Rheumy the symptoms of my most troublesome joints. Then and only then they MIGHT pay attention. I have heard the same thing, “we have to control the disease” well I say…I have not had my disease controlled and I have been on the full spectrum of drugs! So what do we do? I feel like a complainer sometimes, that I am supposed to suck it up..I finally took matters into my own hands recently, when the joints in my feet got so bad I could not walk…I went to my primary (after getting no where with my rheum doc) to get a referral to a podiatrist, which I had to wait for an appointment…no one seemed too concerned (except my PCP) that I had to CRAWL to the bathroom in the middle of the night because I could not put my feet to the floor without excruciating pain! I finally, after several weeks, I see the podiatrist and he says, your sub talar joints are involved, and if this continues the bones in your feet will collapse! Finally, someone is concerned? unbelievable! So I finally get the badly needed steroid shots in my feet and I finally get my rheum office to pay attention..So I get my oral steroids increased by the NEW nurse practitioner at my rheum office…and she notices that my methotrexate dose is way too low! (amazing…after all this time!) The nurse practitioner spends more time with me and seems to notice the signs of subtle swelling that my I did not even see myself! SO you are SO right Kelly, someone with one injured joint gets the red carpet laid out for them…but us? Those whose every move causes pain in almost every joint? We are told…to wait, suck it up, and be patient for the to control the disease…after being treated this way……
I finally broke down and contacted my PCP and talked to her about my quality of life and functioning…I was prescribed pain killers and was put on a contract, something most patients have to do with pain meds in today’s day in age..this is something I never wanted but entirely necessary. My life had become a sort of living Hell. She agreed…she said honey you have to live a life and right now you’re not living….she follows me very carefully and has been such a resource as far as getting those badly needed referrals! Thanks Kelly <3
Hi, I’ve had RA for 2.5 years. My right wrist has been swollen for well over a year amd in the last 2 months its started to shift, which is painful and very disturbing to me, so I went to see a hand specialist. He came in read that I have RA and practically dismissed my wrist without any help. He did go on and tell me how bad my whole hands will be because of RA (thanks!) all that did was scare me and make me wish to leave. Afterward I was so mad, I am still learning to be an advocate for myself and in this case I failed. There are soooo many truely lousy unhelpful doctors out there! I wonder how he would have addressed my hand if I did not have RA.
BTW I have one of the most acclaimed Rhuematologists in Los Angeles and I know he does not pay any attention to what I tell him, my last visit he spent less then 3 minutes with me.
I am getting a new doctor in the new year once I am eligible for insurance again.
What will it take to get standards established? And why must a patieny fight to get believed? I have been living in an Aspen collar for over year now due to the progression of my disease into my cervical spine. It did not start there but it is a fact that 80-90% of patients will experience this progression. With tjat being the case, it along with the cardio vascular risks elevate the need for serious and regular care and monitoring. The RPF is just the beginning and we will make it better for all RAD patients as we come together.
A detail oriented doctor is indeed hard to find. They are out there but circumstances may prevent you from having access to one. In this case I would find a good primary care doctor and depend on them as I’ve had to do. She is very thorough and will refer me to appropriate specialists when the need arises. Recently my rheum doc brushed aside my concerns over chronic anemia, the cause undetermined. She (my primary care doc) referred me to a hematologist who is running all the tests to determine the cause, since it is not a clear cut case.
Another thing I would suggest is to ask your primary care or rheumatologist for a referral to an orthopedic doc if you have concerns over a particularly painful joint or several. You may have an injury that needs attention. Even if you don’t but ra is severely limiting your movement and thus your quality of life, an orthopedic doc may be able give you a steroid injection in that joint to calm down the inflammation. When your joint is in a high state of inflammation it can be easily injured, so what you think is “just ra”, may indeed be an injury, such as tear in your rotator cuff of your shoulder, or in the cartilage of your knee. This happened to me more times than I can count on one hand! Another venue for help could be a physical or occupational therapist. The muscles around our joints can become weak and tight and a therapist can provide safe therapies that won’t further injure our joints. Alas, you can get the care you need and deserve if you think outside your rheums office and use your empowered patient skills.
As always Kelly you hit upon a point I’m dealing with in my personal war. Having had RA disease for 27 years has made it almost impossible for me to track the amount of war zones my body is experiencing. My Rheumy inspects me every 3 months and we review the “major” problems I’m having at that specific time. It became apparent to me after forgetting to tell her of other areas that might not be extremely painful but I’ve been noticing changes or new levels of pain to those area’s that I needed to start documenting my disease paths.
I found a diagram of the human body (front and back,) copied it and am now tracking monthly persistent pain and problamatic issues and started mapping all of these locations. If the pain was more of a fibromyalgia pain I consider it dull and circled those areas such as my arms muscles,upper back and long muscles of the legs. If my pain was ongoing and stabbing pain, such as old damage,feet, fused joints,lungs, mandable or spine I used X’s to mark the locations. I will start color coding too, yellow being new pain, red being intense pain, blue being ongoing everyday pain. Due to my condition I’m also going to notate/rate infections,bowelissues, loss of vision, tinnitus, anxiety, depression, inability to function and side effects of taking so many different medications. My disease likes to get creative and pop up in rare or odd places that quite frankly impresses the doctors but not me. I know this will help me in giving my rheumy/other specialist the information they need to treat me without me forgetting something or when I’m being rushed in or out of an office not being able to focus when so much needs to be covered. Keeping these records will also allow me to see and track how I’m doing when I get that “fog” of not remembering important markers in my life.
Thank you so much for this post! I just went to my RA Doc. I was telling her about my knee swelling and pain and the it gave out and I fell down the stairs. She said oh that can’t be RA it must be Osteo. My spine never gets tested either. She tests my hands, feet, ankles, elbows and shoulders but never my spine, cervical spine or my knees. And I have told her about my spine especially my cervical spine pains and inflamation. There are so many days I wonder am I crazy or can the Dr really be wrong. And then I read your post and now I know I am not crazy! And I truly super tired. Gotta keep on going though. Thanks again-Jenni
I’ve found that I can’t get treatment for any one joint until it is physically damaged to the point where I need surgery. This happened with my pinky last joints (DIP joints) when I finally needed fusion.
I am able to get cortisone shots in a specific joint if needed. Just started asking for that option in the past 3 yrs. I was afraid of joint degradation and afraid of the injection, frankly. At 40 and my kids are older I feel like I can start taking that risk.
Hi, I have not been diagnosed with RA, as of yet, I have an appt middle of next month. Just reading all the different posts on this site, I think I am more terrified of dealing with the doctors than I am at the thought that I could have RA. i think, maybe i should just wait and see how it goes before I see the Rheumy. But then again, I read that a lot of damage is done during the early stages.
I look back and see different ailments or physical problems I have had over the years and believe they possibly could have been early warning signs of the RA, things such as…Chronic dry eye, burning eyes, being diagnosed with myositis and hospitalized, gout, foot swelling, pain in hands and arms. And now, I have stiffness every day in all fingers, hands, wrists, neck, shoulder,toes along with mild pain in certain joints that wake me in the night. some mild swelling in the thumbs, a few finger joints and wrists. Also been having sharp piercing shoot stabbing pain in my left side of my chest as well as in my hands. sometimes it is painful to open a lid, grasp it, even pick up a cup of coffee. As i type right now, my fingers are all stiff in the joints.. my stiffness is in the morning and lasts anywhere from 3 hours to the entire day. Also have been having night sweats and flu like symptoms with somewhat sore throat and hoarseness when I talk.
I will hang in there and certainly let you all know how I make out with the Rhuemy.
Thank you for this site! It is very informative and I will keep following. Ellen
Hi Ellen, I hope you don’t have RA, but if you do, I hope the diagnosis is easy & you’re able to get on a treatment quickly. Those are certainly symptoms that sound like RA, but a good rheumatologist will consider the whole picture and help you know for sure. Since you have to wait so long to be seen, I wonder if there is a cancellation list that you could wait on just in case. Good luck!
hey Kelly, sooner or later one would think that we would get overall care and not just a body part. I swear that is the majority of the problem. There are not many family practioners that follow YOU as the patient instead of a “knee specialist” or “back pain” specialist. I am very blessed that I have found a family Dr that follows all of my treatment and actually workable with all of my “team” of Drs. He also teaches future family Drs at a prestigeous medical school.
I’ve had RA since I was 15 and about to turn 30. I just had my 8th joint surgery, this time a fusion surgery on my foot. Although I had not ever wanted to resign myself to a life of surgeries, they have helped tremendously with correcting joint damage and giving me my life back on some level. For me, I’ve found combining specialists (right now, a foot/ankle surgeon, hand surgeon, and my rheumatologist) have given the widest array of opinions and help possible. Despite the assumption surgeons only recommend surgery, the ortho side has helped provide a different view on the specific joint I am having the most difficulty with. I do have bit different variation of the disease that most aggressively attacks one (now becoming two) joints and then I have residual stiffness and soreness in the others.
I do have a question if there any long term perspectives on post-surgery life for those who have RA. I had most of my surgeries in my teens and early twenties and wonder often what the long term effect of those may be on my body? Particularly the hip areas.
Thank you for posting all you do. I just found this site and have just now started to read and look for others after suffering with this disease for so long alone.
I have been suffering from RA, Secondary Sjogrens, and acute hip impingement. The impingement of the hips are not caused by the diseases above but are impacted greatly by them. When I initially realized there was a problem it was sudden, I was unable to move my body and had a numb left leg. I was taken to the ER. I was sent home with pain meds. and told to see my primary care physician. This was three years ago. Eventually, the pain in my body, legs, back, all over etc. required that I spent most of my time in bed, and when I was able to get around I had to use a cane, or a wheel chair. One year ago I was diagnosed with RA and secondary Sjns. But they just couldn’t figure out the low back, hip, and leg pain. As my joints looked unremarkable according to the testing facilities Radiologists. After much pain and much demanding by myself and my husband. I took it upon myself to seek the care of a hip specialists. I went to see him and was told that I needed arthroscopic surgery on the hip that was causing the most pain. I was told that the surgery may or may not work since I had such active RA and inflammation. The Dr. said he would do his best to try and make the environment more receptive to my disease meds. I had the first surgery, in Jan. of this year….Recovery was long and hard work but totally worth it. I am scheduled to have the other hip fixed in Sept. of this year. My Hip problem was primarily mechanical although it was impacted by my RA and Sjns.
I hope this givs some hope to those who feel lost! I feel that I would still have hip problems if I hadn’t made the ortho apt. and pursued the visit myself. Oh, did I say I’m 46? It’s been a long 3 years with lots of pain and depression. I am not 100% by any means! I still wonder what each day is going to bring me. I still have those bad days where I say why me…but I am thankful that my immediate hip problem is on the road to recovery.
Blessings to you all! That path we share together is long and tough but you have to have “hope” and some days even just a little bit is enough to be thankful for.
You are so right! Each joint counts! When my shoulder got so bad that I couldn’t lift my arm my rhuemy first tried a cortisone injection and a taper of prednisone along with OT. He also xrayed the shoulder to check for osteo or other more obvious injury. I got some improvement from the steroids and OT but still had very limited movement and a lot of pain. At this point he ordered an MRI saying that if I had a rotator cuff tear I should have it surgically repaired because at 58 I had at least 20 years that I would want good use of that shoulder. The MRI showed no tear, but tendonitis in a number of the tendons of the shoulder and upper arm. My rheumy explained that RA can cause inflammation of the soft tissue, tendons and even muscle around the joints that are affected. More steroids, more OT, increased MTX. The shoulder is better than it was – not better better, but better enough that I can sorta golf again (using the word loosely). With my knees – they really hurt. He xrayed them to determine if there was any osteo – none. He checks them at each visit and measures my range of motion. If I were to complain of any particular joint, I’m sure I could get it the attention it needed. I think having a doctor at a major teaching hospital rated number 2 in the states in rheumatology is a major plus! I wish we could all be so lucky!
Unfortunately it doesn’t stop the disease. Or the stupidity of my insurance company. I have hit the top end of MTX and now trying to get approval for humira – oh, the hoops you have to jump! My doctor and I agreed on a shingles vaccine before I started a biologic but do they want anything to do with that? Recommended by the ACR and the CDC for anyone before beginning immunosuppressive therapy. And the CDC specifically says that anyone taking MTX for RA is NOT immunosuppressed enough not to take the vaccine. My insurance won’t cover it if I’m taking MTX! Whatever!
I should probably see a specialist over my wrists, one of my knuckles, jaw and spine but I just don’t have the time! I’m working full-time, and I can barely do that, but I have to because I need the money to pay for school. If I don’t go to school, I’m not entitiled to coverage under my father’s insurance plan for biologics. I have a bunch of appointments to start Orencia infusions. I have appointments to see my rheumy. I have to take time off work for both since they’re over an hour away from where I live. I need to see my GP for normal things like a regular old physical. I really need to see an eye doctor over the chronic dry eye and irratation I’ve been experiencing (RAD related but of course a rheumy won’t touch it). Plus there’s the monthly blood work and occasional xrays I need. I’m expected to do all this, work and go to school. These things are difficult for a normal person!! I have RAD! I work for 8 hours and then go home and sleep because I’m too exhausted and in too much pain to do anything else! I just don’t get how doctors expect us to go about normal lives with all of this and make appointments to see a specialist over each individual joint! Phew that was a long rant but feels good put those frustrations out there. Thanks for this post Kelly!
I was just diagnosed with RA two days ago. My mother was diagnosed in her early 50’s when I was about 13, and I know how all-consuming it is. She died at 65 from a heart attack or stroke.
I’ve mentioned the diagnosis to a few friends and most responses were along the lines of, “What do you expect, everyone has something as they get older.” (I’m 47.) One asked me why don’t I try alternative medicine. My main symptom is pain in my hands and forearms. Now that I’m diagnosed I’m realizing it’s also in my feet, shoulders, neck and knees. It hasn’t yet affected my function. The rheumatologist prescribed Plaquenil. She also sent me for a hand ultrasound, more blood tests (so far negative) and an ophthalmologist. I see her again in three months. I live in Israel and the health care is pretty good. A woman in the waiting room, who was accompanying her mother, told me how the doctor managed her mother’s care better than the GP, and sent her for a colonoscopy based on the results of a test that she noticed in the mother’s records.
As a long-time blogger myself (since 2006) I want to tell you how impressed I am by your site, your writing, the organization and the topic coverage.
I hope it’s okay to share this post on cooking with disabilities, based on my mother’s experiences (and soon to be mine?): http://www.cookingmanager.com/cooking-disability-injury-tip/
Somewhere you mention the stoicism of RA patients and I know that to be true of my mother. It’s so depressing when people don’t understand.
Hi, Hannah!
I just read your post. I know how scary it is to be diagnosed with something that you’re a bit too familiar with. Besides RA (which I guess is being called Rheumatoid Autoimmune Disease), I have RSD (A.K.A. – C.R.P.S.). I have experienced numerous flares, for lack of a better word. The “flare” in my left l.e.(lower extremity) has been active since early April 2005. I’ve experienced a flare up which began in my right arm Oct. 2007. The RSD in my arm has settled down since but not my leg.
I know that some parts of knowing can make it simpler, but I understand that “KNOWING” a disorder or disease can take your breath away.
I was also interested because you mentioned your forearms being an involved part of your RAD. I have trouble with my hands, forearms, elbows ect., but Rheum. DR.’s usually tell me that hands don’t count for RA. Also, I haven’t had one Dr. that has said that all the pain and swelling in my forearms was(is) related to my Arthritis (or autoimmune). I find it comforting to hear that others experience similiar things.
Thanks for writing, Michele’ J
Very interested to hear about how your appointment goes. I go back to see the pain doc in a couple of weeks. Just once I would like all the places that need attention (cervical, lumbar and sciatica) discussed and a plan put together to treat them all even if it’s one at a time. Other times when I have gone, I have to choose the place that hurts the most. Funny thing, sometimes by the time I get an appointment set to have the injections, it’s rotated to another spot.
Why don’t they listen to those of us that live with this disease? I listen to what they know from their education both formal and through their practice. Why doesn’t my “on-the-job-training” count as a patient?
perfect question of the day, Amy. I wish I knew the answer. It seems to be a question of respect. There are some doctors who do listen to patients, but it’s not the norm w/ this disease, which has set us back in research – example of the day> http://t.co/oZ5vJyK5 “Standard Disease Activity Measures May Underestimate Foot Synovitis in RA”
Dying of RA? I have never heard of RA causing death.
My RA has started attacking my neck. I have not been to a RA Dr. for my neck (because I cannot tolerate traditional RA Meds, & Drs. do not know what to do with me. I have been using natural methods like Gloucosimin & Krill oil. Aspercream as a rub & sometimes tiger balm brings temporary relief. I had to take to my bed yesterday, my whole body ached & I felt very ill, running a low grade fever too.
I had to go to a podiatrist earlier this year because I had a wart on my foot that would not go away. I wore flipflops that day. The podiatrist took one look at my feet and asked if I had RA…he noticed my bumpy toes and ankles, did xrays of my feet (had baseline xrays in 2004 but nobody ever ordered repeats)and ankles. I am usually pretty skeptical of podiatrists, but this doc was on the ball. He showed me some exercises to strengthen my ankles, and when i mentioned my ankles hurt usually after compensating for my knees, he called my insurance company and got me a TENS unit to use to help break the pain cycle. When the PA came in the room, he gave me some larger gelpads to use with the tens to use on my knees. It doesn’t take away all the pain, but it helps.
I have to say that at each of my rheumey appts, the doctor does check all my joints, very quickly, but when I tell her i have thoracic or low back pain she brushes it aside. Again, it boils down to the fact that they don’t listen. My doctor is attached to the medical school teaching program and the only time she gets kind of thorough is when she has a resident with her. This is why I wish they used RN’s as part of their office team…they take the time to observe and get the whole picture, forming a closer bond with patients because that’s what nurses are taught to do.
Oh my gosh…Insurance Co.’s sure know how to put an RA patient into an emotional state!! Everything is a fight with them. I’m surprised they haven’t caused nervous breakdowns.
Someone with severe RA is already maxing out on the physical ability to endure constant stress. They seem to hurt the people they are supposed to help.
I was diagnosed in August of 2011 although I suspected I had RA before that. I have gotten a wealth of information from this site and I am so thankful for it. I have had some of the same concerns voiced here with a few of my doctors. I asked my pcp about the lack of follow up images of any kind and if I needed an ortho on my “team” she said no. She also said it is “assumed” that if you have RA in one joint it is everywhere. She will not treat me for anything she feels is connected to my RA unless my Rheumy (who recently moved from 5 minutes from my home to an hour away) approves it. My rheumy moved to a very large practice and getting a call into him and a call back is almost impossible. I asked my pcp to give me a depo-medrol shot to help me through the end of my last super flare and she said it was against her morals but I begged and she relented. Before I was diagnosed she would throw prednisone at me frequently and I usually refused it because of nasty side affects and now she would not give it to me unless I was on my deathbed. My Rheumy did fax her a letter saying I could have any injections needed as long as they were not live viruses. I just find it hard to manage this disease when so many doctors are not well versed in RA.
I have been in pain management for a few years for SI and back pain. PT for 6 months now I am doing injections and RF Ablation.
I went on Humira in May and since going on it I have had my first 2 super flares, 7 teeth have chipped, one tooth has cracked, one crown will not stay on and I have nausea 24/7. My Rheumy finally called me back last week and agreed I should drop the Humira. Yesterday his nurse called me back and said the bloodwork I have been having done every 4 weeks is good but the doctor wanted to withhold adding something else until things calmed down.
My family thinks I am obsessed with researching RA and medications. My sister thinks I should stop all meds except pain meds. They really make me feel like I am an idiot. I feel knowledge is power.
Could ya’ll comment on these experiences so I can have a measuring stick so to speak. I know this post is long I just needed to let it all out. Any feedback will be appreciated.
Hi,
It’s been a while since I could visit, I’m glad I made the effort today. It’s always an encouragement to feel normal in a group of people! Dr.’s have always told me I wasn’t: “a book case” , “normal”, or “how it’s supposed to be”. Then I come on here and read articles and comments, and I feel “like everyone else”. It is always good to be yourself ; and to figure out how to still “BE Yourself” with RA. However, I find comfort in knowing someone else REALLY understands. Understands it all.
I have found that HANDS don’t count with RA ( A.K.A.- Rheumatoid Disease 🙂 ). I was diagnosed with RA by one Rheumatologist, but he wasnot on our insurance so we could not continue to go to him. I was nieve. I thought WITH A DIAGNOSES that the next rheumotologist would treat me. NOPE! I have seen 2 since then – giving them time to get to know me a bit and go over records.
I have two problems and wondered if you do to. I have NEGATIVE BLOODWORK and my most visible aggressive arthritis is in my HANDS. I have been repeatably told that: ” It’s really unusual for osteoarthritis to affect ones’ hands so aggressively, and at such a young age.” This past week a new adjective was used, erosive. Now, that’s a word that makes a pretty picture! But because my bloodwork is negative, I am regularly told that it can’t be RA.
This Disease has continued to get more involved, effecting more of my body. Even my voice box and eyes! How do I (WE) get treatment if doctors refuse to recognize it (RA)? Especially when doctors don’t (won’t) count certain joints as ligitimate involment, and they are unwilling to follow even the most current recommendations (from large studies) about diagnosing RA based on symptoms?
A few days ago, my Rheumatologist ( Dr. Where’s the Proof?) said he would support me getting into a study . Here’s the hitch. I have to find the doctor or the study. Whatever happened to doctors helping you?
If anyone knows about a good doctor (who treats patients with negative bloodwork), or one who runs reliable studies I would appreciate any info.
Thanks,
Michele’