Born2Sew

Now, I really feel at home here. The doctor says I have fibro, lupus, rheumatoid arthritus, sjogrens syndrome and osteoarthritus. Some days are good, some days are lousy, some days are really really really lousy. I finally had to retire on disability. The good thing about that is that I sew when I can, when I feel up to it.


Hugs to all of you! I really do feel your pain.

Thanks to this topic, I just remembered 2 nite is my nite to give myself the methotrexate injection. Lovely.

fabric-holic

My primary says I have Lupus and fibromyalgia. I went to a Rheumatologist and he first said I had Lupus and Sjogrens, took alot of blood, then told me I have Sjogrens only and gave me Plaquinel(?). He didn't check me for fibromyalgia, and said I might have Lupus too but he didn't think so. Huh? I thought that's why I went to a specialist so he could differentiate.
Anyway, do any of you take Plaquinel? Does it help?
I've been on it a month and I am hurting so bad yesterday and today that I wish I could stay home from work.

Born2Sew

Fabric-holic, I took plaquenil for at least 5 plus years.
The only good thing I got from it was that it seemed to help my dry eyes. I couldn't tell it ever did help with any pain or relieve any of the other symptoms. In fact, it made me tired and depressed. I finally quit it altogether when I read up on the side effects and realized that it was making me worse. Very difficult to describe in words how it was making me feel. Total despair maybe? I really believe I would rather die than to have to keep taking that stuff. I stopped it and refuse to take anymore of it.

They say it really does help some people, and I'm glad for them. For me, it was not the wonder drug. Also, it sometimes takes several months for it to really help. How much are you taking? I would guess 400 mgs.

Feathers

I was diagnosed about 3 years ago. My doctor told me they don't like to diagnose Fibro because there are so many other problems that have the same symptoms so until they can rule out everything else, they don't diagnos the Fibro. I've had nurmerous tests for rheumatoid arthritis because I have arthritis in all my joints and on both sides of my body but so far I'm not showing positive for RA...just several of the other 105 types of arthritis a body can be afflicted with. My neck and shoulder, one hip/groin area and my feet aches and pains and numbness are what bother me the most and the most frequently. Someone said they have trouble pulling the covers over them in bed, boy, I can relate there. I haven't been able to vacume my house in over a year...DH is wonderful to do this and mop the floors as these are movements in my shoulder that hurt so bad I just refuse to do it.

I'm in a bad period right now. Think it was brought on by a weinie roast over a bonfire at a church function last week where we almost froze to death...even with warm clothing on. Cold really knocks me out...rain also seems to affect my joints. And w e've had LOTS of rain the past few days. I also have alot of stress right now with a very ill mom fighting cold and flu, 3 recent heart attacks and a daughter who is battling brain cancer and has been told she is terminal ...."life is short, eat dessert first" has always been my mantra but now suguar is taboo for all of us with Fibro so guess we'll just grin and bear it as we pass the chocolate cake off to someone else. :wink:

fabric-holic

Yes I'm taking 400mg.
I had to read one of your sentences twice. You said it helped dry your eyes. I've already been told (in the 1970's) by an opthamologist that my eyes are a little too dry and wouldn't be able to wear the contact lenses that were available then. I also told this to the rheumatologist so now I'm wondering if I should continue taking it. My eyes don't feel gritty nor do I need eye drops but they're "a little too dry" apparently.
I haven't felt any better since I've been on ithe Plaquenil but I realize it's only been a month. I just left a message with his office asking for some pain meds cause I'm hurting so bad and had to take 3 days off last week. I'm afraid to take any more days. My right fingers, wrist, elbow, shoulder, my upper back, my toes are killing me.

shirleyt

hI dITTER43
I HAVE FIBROMYALGIA for 11 years one of the best thing i do is go to ymca . I don't swim just do exercise. The cold is hard on me too.
shirleyt

Born2Sew

I am so sorry that you hurt so much. Please note that I said it DID help my dry eyes. So keep taking it. Do make sure that your opthamologist knows you are, as it can cause problems with your vision. Regular eye exams are very important because of this medication. I do hope it will help you soon.

I think fatigue and pain are my worst problems. Of course, there are a myriad of symptoms that come and go. The worst is when they are all present at the same time.

I wish I could offer you a suggestion that would help alleviate your pain. My heart aches for you and the others here who are suffering as well.

fabric-holic

Oh I misread your first post. I thought I read it helped to "dry your eyes" instead of "it helped your dry eyes". Big difference in meaning.
Thanks for bringing it to my attention.

Born2Sew

You are welcome. I can't keep from wondering if you have Sjogren's. My daughter went in recently for an eye exam. She has worn contacts off and on for several years now. This time the eye doctor did not want her wearing them as she no longer has a mucos membrane covering her eye. When she told me, my first thought was Sjogrens. She called the eye doctor back and asked him about it. His response was "Oh, I didn't know you had a history of Sjogrens in your family. You need to see a doctor and have tests done so you can start treatment immediately before this gets any worse." It made me so sad, knowing she got it from me... She can't afford to see a doctor and have all those tests. She has no health insurance.

charwhit

I also have it fibro, I had pain everwhere but major pain in my right hip. I had exrays, mri, cat scan nothing showed up. but they gave me shots in the hip then they said maybe it was my back so I had 3 epidurals they didnt work either. so now I take 150 mg of lyrica and mobic which is an anti inflamatory and an ant depressants that is what all I take in the morning then at night I take another 150 mg of Lyrica. I also take vicadin when I need it. O by the way I still work! Librairan in an elementary school. Shelving books is a bear. I spend my evenings on a heating pad and try to stay wake past 7:oo pm and that doesnt always happen. I always hurt but meds make it alittle bearable. but not always I'm only 57 and I walk around like a 90 yr old. I also don't sleep well either this stuff is awful and I wouldn't wish this on my worst enemy.