I am a 26 year old mother of three. I recently was referred to a rheumatologist for my joint pain, and hyper-mobility. My RH and ANA were negative, but all of the tests for inflamation were high, and to the extreme surprise of my rheumatologist My anti-CCP test came back a very high positive meaning that I for sure have RA, and it is going to be very aggressive. I also have a vitamin D deficiency, and she referred me to a geneticist for diagnosing the hyper-mobility. I strongly suspect that I have a condition called Ehlers-Danlos syndrome which means that my collagen is not made properly, and my connective tissues are very weak allowing my joints to extend way past the normal range of motion. I have a host of medical problems caused by these three conditions. The worst is the fact that I have so much pain, and the Rheum and my MD both refuse to prescribe anything for it due to my stomach issues from ibuprofen overuse. I am currently on Plaquenil, and over the counter vitamin D. My main question that my rheumatologist just couldn't answer: How are the EDS and RA going to interact with each other. Has anyone heard of someone having both? EDS is extremely rare so I am asking this question on the EDS site also. I want whatever info I can get.
Q: Rheumatoid arthrits coupled with Ehlers-Danlos syndrome
The short answer is I simply don't know. Those of us who answer questions in the sections are not doctors, but answer based on our own experience and whatever knowledge we've managed pick up - given that EDS is rare, unfortunately that means I haven't had the opportunity to learn anything about it. The chances of you getting an answer or probably better on the EDS site.
I do have a couple of practical suggestions. Are you on a stomach medication like Losec, Pantoloc or Nexium? I've been on Pantoloc for years due to the stomach issues created by taking arthritis medication for decades - often, in order to take the medication you need, you need to supplement with other types of medication to handle the side effects. You may want to discuss this with your doctor so you can get the kind of painkillers you need - expecting you to live with pain is completely unreasonable. Another thing that can help heal your stomach is to take acidophilus (a.k.a. probiotic) once or twice a day - get the good stuff at the health food store and keep it in the fridge. I see a naturopathic doctor as well as the regular Western kind and she's the one who suggested it to me. It has done wonders for my stomach - I still need to take the Pantoloc, but my stomach no longer tries to eat itself. You may also want to consult a naturopathic doctor, as they can help you build core health which can made living with RA easier.
I dont have EDS. My husband does.Found out from Birth in 1977. And it is weird that I googled RDS And RA. Because I also was wondering if EDS people get it. I am almost positve that EDS suffers get it. They have to... I mean there is no way with all the joint pain that my husband deals witth on a daily basis, that he would not get it.
My husband is 30. And he has pain every day. I too worry that he will have issues down the road. He refuses to take pain meds, because he dont want to get addicted to them.
I wish you luck on your path to finding out whats going on. And I would google a EDS forum. Join and talk to others who can help with real answers and real experiences.
Deanna
I have both Ehlers-Danlos Syndrome and rheumatoid arthritis. At times it looks like my range of motion is normal, but it's not normal for me, since my joints bend back beyond the "normal" point for the average person. It's painful having both RA and hypermobile joints.
The synovial tissues are more prone to being damaged by RA than that of the normal population with RA, because our collagen is genetically not as strong.
A person with EDS has a 30% greater chance of developing an autoimmune disease than the general population.
Cindyh
We have so much in common, it's eerie.
The information on RA being more common in EDS comes from National Institutes of Health. There's been a study on connective tissue disorders and learned about it from there.
I know what you mean about some meds used for RA, being riskier with EDS. Prednisone for example. We held off as long as we could, and I risked taking it--in less than a year I formed subcapsular cataracts in both eyes, and needed surgery to remove them.
I flare up easily from infections, and particularly stress and being overly tired.
EDS is bad enough to live with...it doesn't feel good when an inflamed joint partially dislocates, or even just moves further than it should.
I've been so stiff. Not sure if I have more, or I'm used to being looser.
I'd like to communicate with you more, and not sure how this site works...if you want to send me a message, please do.
Not that many with EDS, and add RA to that, it's not that common.
Cindy
I also have EDS and RA.... I would love to get in contact with you all or if anyone else knows of a site or group online to contact. I see a Physical Therapist along with a Rhuematologist but neither can often tell which illness is causing which issues..... it makes it really hard to figure out which RA meds are actually working. I would love to discuss what medications work for others without causing more issues for the EDS.
Thanks!
Hi there. I'm sure you all already know this, but if this helps even one person searching for answers, then I am happy. I also have Ehlers Danlos Syndrome (EDS). It took them 30 years to figure it out...and a lot of patronizing, condescending doctors calling me a hypochondriac. I was so relieved to finally get the diagnosis from the geneticist, even though there is not much that can be done for it.
I always have an elevated Rheumatoid Factor. In fact, it almost eliminated me from a medication study for Fibromyalgia because they did not want anyone with any type of arthritis. I have done quite a bit of reading, and I have come across a lot of information that states that Rheumatoid Factor can be elevated with connective tissue diseases ( which, of course, EDS is ). So, unless someone with EDS as other symptoms, such as visible joint deformity or the nodules, it may just be EDS, not necessarily Rheumatoid Arthritis.
Here is one site that discusses this a little:
http://arthritis.about.com/od/radiagnosis/a/rheumfactor.htm
Having said that, it wouldn't surprise me, as others have mentioned in this post, if all EDSers will end up with arthritis in some form as they get older. It seems, unfortunately, inevitable with the connective tissue damage and the joint damage from subluxations, hyperextensions and dislocations. Even though I have no official diagnosis of RA, I do have severe morning joint pan and stiffness ( I know, weird that someone with EDS has stiffness, but as you can see from all the posts, it happens ).
I honestly do sometimes wonder if there is an autoimmune factor of EDS. I mean, someone as young as us should not have the amount of problems that we have, even with EDS.
My diagnoses:
Fibromyalgia
EDS
Barrett's Esophagus ( most likely result of EDS since those valves between esophagus and stomach ARE connective tissue )
Mitral Valve Prolapse ( again, most likely due to EDS )
Neurocardiogenic Syncope ( no idea how this could be related to EDS )
Irritable Bowel/Spastic Colon
Allergies
Chronic Gastritis
You name a joint, I have a severe problem with it ( 8 joint surgeries already, which actually isn't much for someone with EDS ).
Does anyone else with EDS have gastrointestinal problems? I keep telling my Gastroenterologist it has to be connected to the EDS, but he's not so sure about that. You do see an increase in GI problems in other connective tissue diseases, though, such as Scleroderma.
Hi,
I am Jennifer, I have never written on any type of blog before so I am nerveous.
I spent 10yrs. in the Navy they did a couple of surgeries on me because my right index finger fell out of joint and they did not know what to do.
That was almost 15yrs ago, so now they have given me a diagnosis of Ehler Danlos hyperextension. For years it really never bothered me. But in the last year, my knees are either extremely stiff and can't walk (I have a walker and crutches). Most all of my joints sublex and is extremely painful. I have tried to work but usually have to quit because I get so tired, I will work 3 days and spend 2 days in the bed because I am so fatigue and it seems to be getting worse quickly.
My last job was in sales and because it was so stressful that I became very fatigued and my thumnb sublexed and it has not yet gone back into joint. So I have arthritis in my hand and have decreased use of my hand and now my eyesight has gotten progressively worse, have to wear my glasses constantly.
I also have problems with my stomoach I have chronic diarrhea, but I am fat.
I feel like such a loser because I can't do the things I used to do.
My question is does anyone have Lupus and EDS or any other type of immune diease?
I am a Bowen therapist and have a client with EDS who shows RA simptoms too. One of my other clients lent me a book called "The Arthritis Breakthrough" by Henry Scammell who writes about a Dr Brown from the US who successfully treated thousands of patients with connective tissue disorders with antibiotics. He says RA is caused by a germ called micoplasma and it responds (after up to 4 years) to a specific course of antibiotics.
Worth looking into as it appears that it is the RA that causes the pain - not so much the EDS.
I have been on Humira and Methotexate for about 7 months now. Me and my doctor came up with an interesting theory. My joints were being injured so often my own immune system decided that My Joints were the issue and started attacking there. My immflamtion factors always hovered right of the edge of being 'fully diagnoised' until my skin also became obviously involved I actually have Psoriatic Arthritis. After I started the immune therapies my skin immediately calmed down about 50% except for flares and 2 days after first dose I was not rice crispies getting out of bed the next morning. It comes back between each dose and is gone the next day after treatments if not the day after. I really find myself looking forward to them even if they dont always make me feel great.
Some sites for the best information on Ehler Danlos are EDNF.org and www.ehlersdanlosnetwork.org. They offer information, support, and up to date research backed by medical advisors who actually know the conditiion. I have learned a ton at these sites. If your over sees most think it is call Hypermobility Sntdrome elsewhere and even here at time and thier foundation is in England at hmsa.org. I hope this helps, feel free to share everything you learn with you doctors. Read all of these sites and you have more information than they get in school. Print, burn, and share with them you are the strongest in your team.
Thanks,
Michelle
HI, My daughter who just turned 12 yrs. has EDS and has since birth, The pain that she goes through is awful and her legs and knees swell and get red and hot to the touch. This breaks my heart and all I can do is give her Tylenol and rub her legs and knees and hold her and just be there with her as she cries herself to sleep. Her legs will " POP" and the pain becomes intense and she is down for days, as she gets older I have have noticed it is getting worse for her. she had a ra and a ana test done which came back positive but the doctors here do not help all I get from them is look up on the internet and get the information you need or send me to another doctor, who still don't know anything. This in itself it so frustraiting. she has been to some many hospitals and different doctors in the last 12 yrs. and all I get is there nothing we can do ,she is going to have to live with this. look up on the internet. just had to let some one else know , Thanks for listening !
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THANK YOU SO MUCH! I wondered if the RA would be worse for me due to my already fragile connective tissues. There are days I am extremely stiff, and can barely bend my joints enough to walk, and days when I am so loose that I can't quit subluxating. My condition has been progressing swiftly since about the beginning of the year.
I have noticed that if I have any sort of bacterial or viral infection whatsoever it seems to cause a strong and rapid flare of my RA symptoms. Do you have the same issue? I never know how I am going to feel one day to the next. It can be extremely frustrating. It is also frustrating that the treatment for one seems to be a no-no for the other and vice versa.
Where did you hear about a person with EDS having a 30% greater chance?
I really appreciate you taking the time to answer my question. I had given up hope of getting the answers I was looking for. Having EDS can make you feel like enough of a freak, add RA on top of it... I felt so completely alone.