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onwardnupward posted:
Does anyone else have multiple diagnoses of auto-immune diseases? I have been dealing with fibromyalgia in addition to a diagnosis of "undetermined spondyloarthropy" and osteoarthritis. My doctor told me it is very common to have fibro with this kind of arthritis, so I am wondering where other people with a diagnosis of both end up. There isn't a community for Spondyloarthropy, and people with Rheumatoid Arthritis don't consider someone without the actual RA diagnosis to fit int their community. This site is great for Fribromyalgia, but I don't hear people discussing inflammatory arithritis here, so I am wondering if anyone else has this "common" dual diagnosis.

. Because of the arthritis, I am just not able to do the type of exercises recommended for fibromyalgia. I do walk every day, and do some wimpy little exercises including light weights for my upper body, but that's it. If my fibro isn't flaring, the general pain and fatique are still there, in addition to joint pain. However, during a flare- the fibro triggers the arthritis and vice versa...so flares are really frequent.

I don't know if this happens to anyone else, but I get feel shot down by the happy little "oh, just do this" suggestions that are supposed to bring great relief- as soon as I get one thing settling down a bit, something else flares up, so there really is no "relief". Not that I'm giving in- I am determined to live my life the way I want to. I just feel like the lone ranger out her with so much going on, and not even any of the WEB Md communities address both. I feel like an outsider....is there anyone else with similar experiences?
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booch007 responded:
Good Evening,

I don't have dual diagnosises but I will talk about not being able to exercise.

For years I heard stretch out, move....exercise you will feel better. ALL it brought me was a tightening of the muscles and a need to medicate. I tried over and over.

So easily the physical therapist would tell me things to do. NOPE.

I found for me, dancing to music I love on a little trampoline (19.99) is all I needed. I keep my arms home (close to the body) and I move. Low impact on the knees and I ENJOY IT!

I could never weight lift even small....to this day. I am very careful with the muscles and mechanics of each to keep them moving and working at their best. (their best for me).

I hate when I hear how everyone is put in a general pool of function. Good luck in finding what works for you. Then you will have success on your side. Just don't quit or sit abck and say I can't. Reinventing you is what the challenge is in front of you now.

Being here, there are many with other diagnosises and some are inflamatory in nature, so stay...you are not alone no matter what.

Take care, Nancy B
 
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xperky responded:
Hi onwardnupward. I am like you! I have 'possible' inflammatory arthritis and FM. The IA is getting worse, with puffy, red joints, swollen toes, hand joint problems, neck pain, etc. In fact, I was just at the rheumy today, and he ran the rheumatic tests again. I'm thinking RA, but we'll see.

The meloxicam I started last year seems to have stopped working, so he's changing it to Voltaren pills. Are you taking anti-inflammatories too?

Last year I tested positive for the hla-b27 gene. Have you had that test?

Like you, I have OA. Mine is in my neck, shoulder and finger...

You are so right about having to deal with one or the other acting up! It's hard for me to walk much as my feet get all swollen and extremely painful from that. I've gotten down right fat over the last three years on top of everything. Ugh!@

So, I think there are others like us here, on the FM site. I have also seen IA posters on the RA site, and I didn't feel other people rejecting them.

Thanks for sharing. I think any painful conditions will be met with empathy on this site.
With Compassion,
Margaret
 
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jillylin responded:
Hi,
I has osteoartritis and HMS. I also get joint inflammation are regular intervals.
Jilly UK
 
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onwardnupward replied to booch007's response:
Thanks for the reply ans support, Nancy. It took me a while to get back because my father was taken to the hospitat and was in ICU for a while. All is well now, though. I have thought of using music- it might at least take my mind off of the pain. I like your encouragement to reinvent!

~Cris
 
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onwardnupward replied to xperky's response:
I will have to ask about the hla-b-27 test- I'm not sure. I have been having regular blood tests for 1 1/2 years- but they are just looking for inflammatory factors, which are always high, even with the drugs (methotrexate and hydrochloroquine.) I still take meloxiacam daily- I haven't hear of voltaren pills- I've used the gel but it has been hard to find lately.

I've also put on weight- it is so difficult to lose when you can't exercise much! But I keep trying. I also have OA and ? in my neck- I went through a 3Xper week treatment with a chiropractor and it has really helped! This was a big deal because the neck pain triggers migraines for me. I am now on a maintenance schedule with the chiropractor, and am maintaining the improvement.
 
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onwardnupward replied to jillylin's response:
You have a lot to deal with, too. Is the joint inflammation common with HMS?
Cris
 
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xperky replied to onwardnupward's response:
Cris, it is encouraging that the chiropractor has helped at least some of your pain! You are on some strong medicines. I wish you could get rid of that inflammation though.

This week I got the "RA of some kind" diagnosis. My tests were negative though, so I hope I won't need aggressive treatment.

Today I used the electric weed blower and my body is complaining about that. Such is life these days. I can't stand to let the pain keep me on the couch too much!

I hope your dad is enjoying better health after the ICU. Take care.
With Compassion,
Margaret
 
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grandmaPattie responded:
I have been diagnosed with RA, Sjogrens Syndrome and Fibromyalgia. I am struggling with chronic pain and fatigue. I don't have any words of wisdom for you.

Exercise is what I am lacking and I get so frustrated trying to find what works for me. I know I just have to keep going and keep trying. It just seems overwhelming at times trying to deal with all the issues of the autoimmune diseases, the pain, the mountains of medications and other health issues that go along with these issues...........eye infections, chronic sinusitis, allergies, weight gain and the ever present pain and stiffness.
 
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mummycow responded:
Elo All
I have fibro and psoriatic arthritis and depression for 19yrs. Day aftter day im in so much pain i cant move, im on steriods at the mo as its all flared up together but they seem to be doin nuffin. Im on Salazopyrin, Grabapentin and numeros meds for depression. I admire that you all seem to be able to exercise. Do you all feel it helps you? and for how long? If i go out to the shops it takes me 2days to get over it. What do you find helps you??? Im alergic to asprin o cant take any anti imflamity meds.
 
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nononsenselady responded:
I just joined in "onwardandupward. I have multiple auto-immune ailments, plus sciatica, nerve damage in my feet and so on and so on. I know how you feel about the exercise part. I was disciplined about exercise until about 3 years ago and then I determined what I did for one part of the body made the other part worse. The very worse part is the fibromyalgia. No one can understand just how much that can take you down. I read a good book, that is basically a "bitch about" book and not a self-help book. It really made me feel better. The author"s answer to fibromyalgia was pain medicine. If you can find a doctor to prescribe them, do it. I finally got my psychologist to prescribe them. They help the underlying depression more than any antidepressant ever has.

Yes, I worry a great deal about addiction, but I have self control and so far, about 5 years, I have been managing.

So yes there are a lot of other people suffering just as you are. You just have to find a doctor to help you take the edge off with some pain medicine then it makes everything else seem possible including exercise. At least you can walk for exercise, I can't even to that without a lot of pain.

Good luck!
 
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Lucy1610 replied to nononsenselady's response:
I have had a cervical fusion, total knee surgery, dx. of inflammatory OA, spondylolesthesis, depression, diabetes, severe osteoporosis, with spontaneous fractures of my pelvis,CFS, severe edema feet & ankles, on steroids X 12 yrs. for adrenal insufficiency, with increases during allergic or asthmatic attacks. Been through 3 Rheumatologists, endocrinologist, oncologist, immunologist, 3 orthos, and finally a reputable PAIN Management Clinic!! It is there I have found the most help, in a caring & compassionate way.
I think we can all speak to the hassles, disbelief, drug-seeking diagnoses from physcians who have never experienced severe & chronic pain. Search for these online or in your community, or per physician or other health care personnel to recommend.
I am a Nurse Practitioner, and for the past 40 yrs. have searched , researched, whatever works. I have been offered medications (Enbrel, methotrexate, etc.) and other biologics which will end my life sooner not later. Pain meds. do not make you addicted if you are in pain! Only if you continue to increase a dose which is beyond your pain threshold..........I am on Fentanyl patch & Dilaudid for breakthrough pain, and it is working moderately well. I can exercise gently in a warm therapeutic pool, 2-3X week, shop for 1 hr. 1-2 days/wk, and care for my Autistic daughter a few hrs. each day.
God is good, prayer, music, meditation & accupuncture have made my life tolerable. Shalom
 
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andiopie responded:
No, you are not alone. I have had FM for more than 30 years.I was active and worked full time as an RN. THEN-----I was diagnosed with severe asthma and was put on steroids which caused me to get fat or rather I allowed it, then 2 years later became diabetic. All along OA was taking over my body. My back was so bad I had to quit Nursing. I was only 59. For a year I was depressed and angry. Why me? But I got over it. I am a strong willed, stubborn person who has refused to let this get me down. In the last 8 years I have had 4 lumbar surgeries and one neck surgery to keep me up right and walking. Nearly all of my back vertabrae are degenerated. I am over due for another neck surgery but my neurosurgeon refuses since I am so sick with other stuff. I have some form of Mixed Connective Tissue DIsease. Still don't know what kind yet. I've been examined by multiple doctors and have had diagnoses. I also have Charot's Foot now which is crippling and am presently in a cast from toes to knee. Also still exhausted, fighting constant pain. Can't exercise but do all my own housework which is considered moderate exercise. Have you tried Flexall, a lotion, for pain.? Hang in there! Crusty
 
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greatplains responded:
I have fibro, OA and other issues such as chronic migraine. One of the best things I can do for inflammation flares is stay away from the grains. My adult children have been educating me and there's so much truth in the view that many of us who aren't celiac are nevertheless grain intolerant. I like Mark Sisson's Primal website (www.marksdailyapple.com), although my son prefers Robb Wolf's "the Paleo Solution: The Original Human Diet." It basically involves eating lots of vegetables and meat, some fruit, nuts and natural sweeteners like honey and maple syrup. Some eat dairy, others don't. There are many recipes on-line and cookbooks like "Paleo Comfort Foods" and "Primal Blueprint: Quick and Easy Meals". My migraine doctor says if you can't say the ingredients in a 'food' it's probably not good for you, and you shouldn't be eating it! Eating better is the best step toward feeling well enough to exercise, and--for me at least--reducing the medications needed to function daily.
 
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nononsenselady replied to Lucy1610's response:
I am sorry I am just now responding to you. I couldn't remember my password and tried to get a new one or find out my old one. But got in a cycle with no help. Finally I remember my old password. At any rate, I am so sorry you have so many issues! It just isn't fair. I am glad you believe in pain medicine and found a doctor that does too. I really need to find a pain doctor specialist too. I don't know how much experience a psychologist has with pain medicine. I think I am going to try acupuncture again. I tried it a couple of years ago, but each session lasted about 90 minutes and I just didn't have the time to spare with work and home. Should it take that long or was she just slow? I found another woman who does acupuncture but I was very comfortable with the first woman. She was a kind of an old hippie from the 70's from my generation. Please tell me what you think or anyone that has tried acupuncture.


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