I to have RA. Have had for a year now and still trying to get the right combo of meds.. I am off work at the moment with a stress fracture in my left foot that won't heal and a torn tendon in the same foot. I have been off work for two months now, while I still get a full pay check it is still hard. My question is to anyone, at what point to do any of us apply for Social Security? Or help? I am 33 but this disease has made my job hard, I am on my feet 8 hours a day and have an hour ride both ways to work. I may look into a closer job once I get this foot healed up. But I have had people tell me not to leave my job until I know weither I can work or not ,because I found out my diagnosis while at this job and my qualify for Diasbility cuz I can't do my job anymore..
Anyone with advise or that may have been through this please help.... Also my supervisor at work is less than helpful with my illness and being off work for so long.
Hi tatagrn,
I do hope that you are able to find the right combination of meds for you. Lene wrote a wonder post recently about Social Security within which she included some great links to sources of information. You might start there with your search for answers and advice on disability. The process can be long and hard so I would move cautiously and with great intent. Know what your rights are, what the rules are, and what you wish to achieve. Good luck and I hope that your foot heals quickly.
You should be eligible for both short and long term disability pay for one thing. These pay out at a portion of your regular pay, not full pay but helps immensely and you keep your job. I looked up SSI and it says you must have been unable to work for a year to apply. I would get going asap because it takes a really long time and they usually reject your first to applications. You can become retrained while on SSI, finding a better suitable job, SSI doesn't have to be permanent either. You can go back to work when able or work part-time.
Ask your employer in writing for accomadations at work, whatever you need medically to still do your job. Do you have an HR dept? Are you union? Is there anyone who can be an advocate for you?
Lastly, your boss cares about the work, not you. You have the right to do whatever you need to to take care of yourself and not have to feel guilty or defensive. Tell him or her that you would love to come back to work-what can they do to make it possible for you to work comfortably with your illness? RA is one of the leading causes of disability and most people have to stop working within 5-7 years of diagnosis.
Good luck,
jamie
Thanks for the reply and link. I am at a loss with everything and it is overwhelming at the same time. I go to the Orthopedic Dr. tommorrow to check my foot and see if I can go back to work.. but honestly my foot hurts more and I think the tendon is getting worse.. Just worried about my job.. I don't think they could fire me because it is medical. And I have more diability coming. Just didn't know if I should pursue diability now or wait and see if the new med (Remicaid) will work and things will return to normal.. Anyway thanks for replying I am glad to have this site to get others ideas and opinions..
Thanks for the reply. Yes we do have an HR dept. I work at University of MIchigan so it is a big place of employment, but no union. Just not sure weither to apply now while at this job or wait. Once my foot is healed I plan to look for another job with less hours and where I am not on my feet. But others have said apply now while I am at this job and having trouble.. Thanks again for the help I appreciate everyones ideas and thoughts..
I think you should apply now, just my thought. It takes a really long time, I'm talking up to 3 years and who knows what shape you will be in by then. What are the negatives of applying now? None I can think of.
It's great that you work at a University, you should have some great benefits. Try to make good friends at the HR dept. who will be helpful to you. If you change jobs(outside the university) you are going to have a pre-existing condition which will affect your health insurance and employability. It is best to stay there and have them place you in another position or make things workable for you.
An interesting side note: I just received my usual update letter from SSI and in it they say they are going to run out of money by 2040. It has been rumored and now they are actually stating it in print. Just another reason to apply now.
Good Luck to you and keep in touch, I want to know how you are doing.
Cheers,
Jamie
You are scaring me! I have had RA for 10 years. I also have asthma and assorted other autoimmune diseases. This all started after a severe whiplash injury, too. Now my sister has developed MS, after a severe whiplash injury. We also have cousins, on the same side of the family - one has had RA for 55 years (JRA) and is extremely crippled because of course they didn't have anything to stop the drugs in her early days. Another cousin has had MS for 10 years.
My sister and I argued over which was worse - the numbness of MS or the excruciating pain of RA. I have had numbness in my third toe for 3 weeks since somthing went wrong a few weeks after foot reconstruction. It bothers me more than the pain - I always say pain is the warning sign of the body. If you don't feel, how can you know what is happening? She said she would rather not have pain, and prefers numbness, and the other symptoms like memory loss etc. Since we obviously have the genes for both diseases, and we are so similar genetically in many ways (hypothyrodisim, big thighs, excitable personalities, etc.), I hope neither of us will end up with both.
It must be very hard for you. My sympathies are with you. Whiplash seems to be a real trigger!
Hi Angela,
Please don't be scared!! That's not my intent at all. Very interesting that you mention whiplash injuries for both you and your sister. For me, my MS lesions are centered in my neck and I do believe that there is a connection (although how to prove it?).
Funny, I'd rather take the numbness than the pain, except for maybe when the numbness turns into unstoppable itching. Now that's an annoying symptom.
There is definitely a genetic component to several of these autoimmune diseases and scientists are getting closer to having it figured out. Probably won't happen in the near future, but they're working on it. Now I wonder if they'll find out that hypothyroidism and big thighs are geneticly linked. If so, then my body makes even more sense.
Thank you for your concern and sympathies, but I am actually doing rather well right now. Not 100% but definitely able to do what I want and need to do. Life is Good.
That is exactly where they found the lesion in my sister on the neck, where the whiplash was. She is a lawyer by trade, and is going for compensation from the insurance company. This is a big issue, because she is in Ontario, where they have no fault insurance and caps on payouts (like $5000) and she has to prove the causality, and that it is a major life changing isse. Maybe some big studies need to be done on whiplash and it's assoication to autoimmune diseases. Like the insurance companies would like that!
As she says, she was an innocent passenger, it wasn't even the driver of her car's fault, and she is not going to take it lying down. I am glad you are mostly feeling good - that in itself should help the process. I find stress always makes things worse.
Angela,
There is a link between whiplash and MS, etc. but it is very hard to prove in court. There is also something called "late whiplash syndrome". These are continuing symptoms more than 9 months after the accident. Symptoms are: anxiety, irritability, depression, decreased memory function, weakness in joints, dizziness. Dengenerative changes occur in the cervical spine, bone spurs can apear that compress nerve roots and cause numbness and weakness in both hands.
I would really like to talk to your sister about her case, I have done a lot of research on it.
jamie
Excuse me, I just fell off my chair reading your post!
I had my third whiplash injury last May. I had hearing loss, vision problems, severe headaches, nausea, memory and cognitive processing problems, and severe depression with anxiety. Insteading of getting better, I continued to worsen until 4 months later one weekend I developed flu like symptoms, lost the use of my hands, swelling, other joints became involved, morning stiffness. In January was finally diagnosed with RA and fibromyalgia. I found this site and have been shocked to discover that most people have had either traumatic accidents or a second serious illness such as cancer. Most people do not have just RA.
One of my doctors and I had already heard this in pharmacy school said that autoimmune disorders usually come in threes. For example, MS, RA, Lupus, Thyroid Dysfunction. I have RA, thyroid and fibromyalgia. There are probably many people with RA who haven't been diagnosed with fibromyalgia even though they have it.
Welcome to the site and I look forward to your posts!
Jamie
i have ra was diagnosed in 1998. its awful at times and i couldnt imagine having another desease. one is bad enough. having to give up a lot of things because of ra is the hardest. i feel for you. ive found a lot of humor and laughter helps a lot.
Humor and laughter certainly do help a lot!! I think that we each learn to live with the cards we are dealt. I remember feeling so very relieved when I was diagnosed with RA and the treatment helped so much with the pain. However, it isn't easy no matter what when you have to give up doing things because of a debilitating illness. Sometimes I miss the things I was able to do before and can't now. In the meantime, keep laughing!!
I'm 46 and have had RA for 10 years. I have started having severe burning, numbness and tingling in my legs, feet, arms, hands and now numbness in my face. I'm going to a neurologist in 3 days. Someone mentioned this could be MS. Has anyone else had the same feeling? I can be walking and my leg/foot can go asleep. Or the burning starts and it feels like it is down deep in my veins. Please help with any knowledge you might have....scared.
Karen,
It can be so scary when facing the possibility of another diagnosis, especially with these incurable, chronic and debilitating illnesses. I'm so sorry.
I also write on the MS website here at HealthCentral where there is alot of information. Here is a post which can help you get prepared for the visit with the neurologist - "Beginner's Guide to MS: Do I Have MS? What Does it Take to Get Diagnosed with MS?"
There is nothing fast and easy about the diagnosis of MS. In fact, the few people who were diagnosed immediately who I know are in the minority. But the neurologist should be able to answer alot of your questions. And be sure to ask your questions!!
I'll let you know that numbness, tingling, and odd sensations are some of my most common symptoms. Instead of burning (which is very common), I get crazy itchiness in isolated areas of my skin which often feels like it is deep down inside. Fortunately, there is medication which is effective in keeping those odd sensations limited.
If you have any questions, please don't hesitate to ask!!
I have had intense itching on the top of one of my hands and my ankle. I never related it to anything until I read that in a post somewhere on the page today. It doesn't feel "deep", but I can't seem to "satisfy" the sensation. I had my "Arava" medication increased and wondered if that might be the problem with the burning, pain, numbness. Do you know anything about that medicine?
The tingling, numbness, burning, itching, etc are called paresthesias. I looked at the prescribing information for Arava and noticed that paresthesias were experienced by 2-3% of folks using Arava during clinical trials. Not a huge amount of folks, but some.
I don't have any direct experience with Arava, but do know that it is being studied in the treatment of MS right now. Unlike the anti-TNF medications, it doesn't seem to contribute to demyelination.
Your description of not being able to satisfy the itch is ABSOLUTELY TRUE for me!! Enough to drive someone crazy. :)
Anyone else have pain in your finger(s), but only when they are touched? Both my ring fingers, on the insides only, closest to my middle fingers, when touched, (sometimes by opening up a bottle top or picking something up) will hurt like I just hit it with a hammer. My RA doctor just says "ok" and doesn't seem to be concerned. Could this be part of MS also?
I went to the neurologist who isn't sure what is going on. He never said/nor I anything about suspecting MS. He is sending me for MRI on Monday of my head and neck, and also a MRI including the blood vessels (another name, but I don't remember what it is called). There is definatly weakness on the left side of my body according to him. Went to my RD today for my 3 month check up since I am new on Simponi. It's not working and my liver count is up now. She is taking me off of it and is putting me on Cimzia to see if that will help me. Has anyone had any success with Cimzia or tell me anything I might need to know before I take it?
Add me to the list. I am having a hard time typing the effects of the RA on my hands right now are very painful. I have been diagnosed with MS for twenty years and have been fortunate to have light symptoms. I have taken Rebif for the last 7 years. I also took Avonex before that for 6-7 years. I have been to a Rhuematologist showed elevated level of RA, but diagnosed me with Splondyloar Thropathy and she put me on Hydroxychlor. She said it would take 3 months to work and I am about a month into it. I found that Chlosterol meds made tha pain unbearable and have had to get off of them. I am hoping this Hydroxychlor works and I don't have to much of the millions of side effects they list. Any one have any info on results of this med?
Hi Doug,
So sorry to hear that you've joined the growing list. I'm losing track of how many people have told me they have MS and RA. Spondyloarthropathy (or ankylosing spondylitis, AS) sounds very painful. Is your spine affected much?
But it is good to hear that your MS has been relatively mild over 20 years. Good for you.
Regarding hydroxychloroquine (plaquenil), I tried it very briefly but had an unusual side-effect. I was so very fatigued (suddenly, and not MS-related) that I couldn't stay awake. I was on the medication less than a week and stopped....the extreme fatigue stopped. I retested the med another time, same side-effect. Yes, I'm not the norm.
My rheumatologist had also prescribe methotrexate and sulfasalazine which I have taken for a couple of years now. They are both commonly used with AS and are compatible with MS, as long as you are not allergic to sulfa drugs (for sulfasalazine).
I still take methotrexate but started Rituxan last fall (and dropped sulfasalazine cause we weren't really sure it was doing anything for me). I used to take Copaxone for the MS but stopped that as well when starting Rituxan (which is compatible with MS too).
Sorry I don't have any direct experience with plaquenil to help you. It works for some and maybe not so well for others. If you do not begin to see some improvement, I would talk to your doctor. You definitely want to try to get the inflammation down and the pain under control as much as possible.
Just make sure that your rheumatologist knows that you have MS, so to avoid the anti-TNF biologic drugs commonly used for RA. They might make the MS worse.
As far as getting responses on plaquenil, you might want to create a Sharepost or Ask a Question so that other members of the community will see it and respond. And please feel free to ask me any questions you might have, I'll do my best to answer them.
Hope your hands begin to feel much better soon.
Thanks for the good wishes and info Lisa. The drug (Hydroxychlor) is finally starting to work the last couple of weeks. My hands and feet are much better though still a bit stiff and sore at times. I am also taking insta-flex which I saw an add online for. Seems like it helps a bit. The doc looked at it and said there were a couple things in it that might help and nothing that would hurt. I'll let you know how it goes from here.
I was dx'd with RA (without positive blood work for RA) in 1985 and treated by a rheumatologist for more than 15 years with EVERYTHING my doc could think of to use. I was also sent to Mayo Clinic during that time to try to find something that would attack all the symptoms I was having.
At that time, Mayo clinic did not believe I had RA but dx'd Fibromyalgia. Doc there told me I was a "text book case study" of fibro. However my rheumy at home denied this diagnosis and continued to treat me for RA. I went to several other docs during the years that did not believe I had RA.
So, I was going along taking prescribed meds for whatever the particular doc I was seeing thought would help me. Through research I had found some RA diagnosis were accurately made with out positive RA factor. However, I had now come to believe I indeed did not have RA but something was definitely happening to me. However, nothing really seemed to help and I was getting worse with more symptoms developing each year.
In 2003 I then started having obvious memory problems at age 41 and was sent for MRI. My mother had early onset Alzheimer's.
A few days after the MRI, I was taken to the ER with possible stroke. Well, neurologist on duty read the MRI I had had a few days earlier and dx'd MS. That was 7 years ago and I am now being treated successfully with Copaxone. I do have times when I feel my muscle pain is the fibro acting up. I also have extreme fatigue which is probably a double whammy of MS and FS.
Lisa, I guess I am one case of not having RA and MS. But, I did have a mistaken case of RA.
Hi arby333,
Wow, very interesting. To think that you have RA for so many years, but then it maybe is not. Then to get a dx of MS so quickly. Amazing.
I'm sorry that you have MS, but glad that you finally got that diagnosis. Sounds great that Copaxone is working for you and that your MS hasn't gotten any worse.
I don't have fibromyalgia but understand that it can be debilitating. Does your rheumatologist (or whoever is tracking your fibro) keep track of your vitamin D levels? It's important to not just be "sufficient" but to have a serum level between 50-80 ng/mL if you have an autoimmune disease.
My rheumatologist has told me that some of her fibromyalgia patients felt much, much better when their vitamin D levels were raised into this range. Two years ago I tested at 7.8 ng/mL and was experiencing alot of muscle and joint pain. As I've gotten those levels up, I have felt much better. Some of the improvements were immediate too.
Thanks for your comment. It is kinda funny to come across somebody who kinda had RA and MS together, but doesn't really. Hopefully you continue to do well and feel better and better. :)
This story sounds like a carbon copy of me!! I have been having symptoms of "something" on and off. Had symptoms of RA, was tested and came back negative. Then saw a Rheumatologist and he said it was fibromyalgia. All of the symptoms that he mentioned were ALL me. The only thing is that I am sick ALL of the time. I catch any virus within 10 miles it seems like. Antibiotics do not help when my primary care thinks it may be a bacterial infection. I have sever psorisis(sp?) on my scalp. I have shigle break outs once or twice a year and just recently had surgery for a plantars wart on the bottom of my foot that would not go way. I have a horrible immune system. Someone had suggested that I go see an Infectious Disease dr. I am considering it. I even had an HIV test, negative, thank goodnes!!! I have two older sisters that have Multiple Sclerosis. One diagnosed in mid 20's and other in early 30's. I am 38 and not had an MRI in a number of years. That worries me, but having done research on the probabilities on multiple siblings with MS are rare. I am just so frustrated and feel so alone, I don't know what to do... Can anyone relate or have any advice???
Hi Lisa,
I was diagnosed with both diseases in 1994. I had a few flareups of both, but they always went into remission. However, each flareup lasted longer than the prior one, and took longer to recover. In 2007, was diagnosed with degenerative disc disease, and finally, (after phys ther and corticosteroid epidurals) had to have spinal fusion surgery in Feb, 2009. I had to stay off of all anti-inflammatory meds for 6 mos as I have very brittle bones. Needless to say, those were the worse 6 months. I have not returned to work, and am applying for disability retirement. My question is how long did your disability determination take?
Dxed in 2004 for MS. Yep, I have it. Now I find out I have RA. Okay I am also a type II diabetic, steroids just tear my sugar rate up. So I have to adjust my sugar if I take steroids with Lantus insulin shots. I take Rebif for the MS. I think I am doing great with MS. It has allowed me to continue to work full time. I have become the falling queen of my house. I am 65 soon to be 66 and have not plans to retire unless my body gives up on me. But now for the big question what kind of meds to you think the Doctor will give me for RA to start with?
I go to see him tomorrow (22nd) for the first time. We only have one Rheumatologist in Montgomery Al. I hear he does not have much of a bedside manner, but I will go with an open mind and I hope he learns that I don't either. LOL So Much for fun and games with life, I will cheer and sliding board from the board to ground or a parachute that works.
Hi Carole,
I know what you mean about the alphabet. Guess I should welcome you to the MS/RA club (one that nobody really wants to be in). So good to hear that Rebif and the MS are doing well for you. Good for you!
Since you have MS, your choices for RA medications are somwhat limited. Your doctor should not recommend any of the anti-TNF biologic drugs (ie. Enbrel, Remicade, Humira, Cimzia, Simponi). My doctor started me with some of the older drugs including methotrexate, sulfasalazine, and plaquenil.
I stopped after plaquenil after one week before it make me strangely fatigued. When I switched medications in the fall of 2009, I stopped sulfasalazine and started Rituxan. I stopped Copaxone at the same time. So now, this MS/RA patient uses methotrexate and Rituxan.
Definitely share with your doctor that you want to get this under control and stay functional and active for many years to come. There are additional treatment choices other than the ones mentioned above, but those are the ones that I personally know something about in relation to MS and RA.
Please let me know how the appointment goes. :)
Lisa Emrich GOD BLESS YOU. You're not letting either MS or RA get you. Your journey sounds like what most of us go through. I"you can't have RA becuse your test are normal" I was told Now the nodules on both hands are larger and the pain is worst in the hip.Then comes MS last year.Finally,in a way I was relieved, I wasn't imagine all the problems of:vision,vertigo,memory lapses. I've become PRO ACTIVE> planning to call Rheumatologist and have a new set of tests. Keep up the good work.
Well I am back. I now take rebif for MS and methrotax (spelling wrong) for the RA.
I chose to take it by shot since I am already needle friendly. Plus it take a long route I think to go through the liver. So far so good. I also bought the routine folic acid that you should take with the ra meds. Not sure I am going to like it if I loose my hair. Told my hubby to save all his caps. so far so good. The fatique is what gets me now, from both situations, but I can still work full time.
Hi Carole,
Sounds like things are on track for you. Very nice. I think you're right about the injectable methotrexate. Lene frequently talks about how it bypasses the liver. I don't know if the folic acid has helped me to keep my messy mane, but I do know that it helps to keep my mouth in good shape. I stopped taking it for awhile and my mouth didn't like that so much.
Please keep me abreast of what's going on with you. I really do like to keep in touch with others who have both MS and RA. In fact, I just recently put together two posts of interviews with other patients. If you haven't seen them, you may be interested in reading here and here.
First, thanks for this information. It makes my current journey seem less 'special' (and not special in a good way.)
I was diagnosed with RA 10 years ago. I got sick really fast and the diagnostic period was rough. HOWEVER... I am fortunate in that I responded the the biologics when they came out and had amazing identical twin daughters seven years ago. I worked full time and even got certified to be a fitness instructor. I was very active in the Arthritis Foundation, and I became staff with them eventually. There is thought that the exposure to biologics for so long turned on the MS.
Unfortunately, I am not working at the moment. A month ago I was given the diagnosis of MS as well. (Further, I have been diagnosed with severe TMJ, fibro, complex migraine disease, IBS, and collagenous colitis... and who knows what I am forgeting.)
I am in the information gathering face of my most recent diagnosis, and it is scary and tiring, but I know it will get better.
So.... why am I here today? My docs put me on 20 mg of Avara with the hopes of battling both major diseases at once. Unfoertunately, I am not coping well with the drug. I have a rash (apparently benign), can't sleep, nausea, sweats, exhaustion, etc. I met with the rheumatologist who pointed out that it's hard to pinpoint what symptom is coming from what, but he has adviced me to cut my Arava does to 10 mg. I am waiting to hear back from neurologist on this, as I will put up with the side effects for awhile if it means exploring other options and preventing further brain lesions.
Has anyone else been on Avara for both? What dose? And what has been your experience?
THANKS SO MUCH!
Sarah
I too have both of these diseases. I know most won't agree with me but I have a somewhat opposite viewpoint of this situation. Early attempts to intervene with steroids and methotrexate increased every symptom and took me downward rapidly. Within tow years I was awarded permanent SS disability. It took a while to begin to hope for a future but slowly I was able to overcome disability with immune building. Vitamins, rest, good nutrition, amantadine, change of pace, adapting to lighter schedules, etc. Who knows - prayer, faith, I regained functionality (originally considered permanently lost) and returned to workforce for fifteen years. Now I am in mid-sixties and still battle the fatigue, exhuastion and severe chronic muscle and pain syndromes. I am convinced there is a direct tie between the two diseases and that "auto-immune" will one day be removed from our vocabularies. My body is mounting a huge defence against a foe - and I am not the enemy. I have heard lately there may be serious investigation into immune-depletion...an opposite viewpoint and approach. I don't know who is conducting the studies. Do you?
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great post! It reminds me yet again how very difficult it is to get a diagnosis and it was interesting to read about how to autoimmune diseases can muddy the waters even more.
Thanks Lene!! Wouldn't it be nice if everything were cut and dried, easy to decipher, and without difficulties? LOL. But that's not life.