Hello
I have RA and am in a never ending flare....taking arava and enbrel..now it looks lilke fibromyalgia is also rearing its ugly head
What do I do.....
I hurt all day everyday....and it even hurts to hug sometimes
I hate taking medications because I am on alot of them I have thyroid auto immune issues etc etc.
I feel alone in this circle of pain.
Hi - you are not alone - I have RA and Fibro and am in pain all the time as well. Most people post on the RA board, even with other issues. Talk to your Dr. - I've tried several meds and I hate taking them too, but if I don't take them I'm worse. But do not feel like you are alone - it can be easy to feel that way when you're in lots of pain constantly, but that is where this site really helps...it helps me when I see that other people are having the same issues so I know I'm not going crazy! Sending you hugs
To Gimpymama: dancing is what I would be doin' too!
Beingbebe is right Neurotin is great for easing some of the pain. Also, believe it or not Cymbalta is also good for individuals in chronic pain.
In addition to the RA, fibro, etc I also have PN so I take Neurotin 5 times a day now and since the dr added the cymbalta I'm noticing even more pain relief. With any chronic pain it is not unusal to be placed on anti-depression meds. They really help with the pain and if the pain improves our mood improves.
good luck.
Gram,
I am in the same boat as you are. I have had RA since I was 12, and I am 38 now. In 1997, I was diagnosed with Fibromyalgia, and I have an underactivte thyroid. My question is, How are you sleeping? Are you on anything for sleep? I am on lunesta right now and it helps a lot. When I was first diagnosed, I thought I was going to die! The fatigue and the inability to concentrate and remember things was horrible! Not to mention the pain. When I started taking a sleep medicine and some pain meds that helped a lot initially. It took awhile maybe a month or two (it may be different for you) where I could sleep a whole night through. Also, muscle relaxers help as well. There were times that I felt that if one more person even touches me I'm going to scream! (and I was a sped preschool teacher at the time). I know how overwhelming it can be! Sometimes its helped me to write in a journal! Just getting all those feelings out made me feel better. I know you don't believe this, but you will get better. I know cutting out caffeine helped me out at the time. If you can, make your bedroom a quiet peaceful sanctuary. I like to play those CDs that have the ocean waves on them. Anything that will help you relax, would be worth a shot. Over the years, I've learned to (and I know this will sound weird) separate myself from my body, like praying or meditating - almost like pretending that this is body is my shell and retreat from my extremities, like they are not even mine. I don't know if this makes sense or sounds crazy. It takes practice, but when it's really bad sometimes that's all that works. If your body can handle it, sit outside in a cool breeze and imagine you are in a favorite place- - mine would be like I'm sitting up on a green grassy knoll near the cliffs of Ireland and a peaceful breeze is blowing around me and it's totally quiet. Sometimes I just lay in my bed with the lights off and it's totally quiet, and take deep breaths, and try to relax. Somehow find a place that is your sanctuary.
I have fibromaylgia and RA I am scared because my doctor wants to put me on predisone. I hear its a terrible drug. I am in pain all the time. Muscle relaxer help with the stiffness
Hello All,
I definitely feel your pain and probably a few others also. I do hope you get some relief soon. I have RA, FM, MS, Hypothyroid and some other mess, I am right now in some serious pain, and on many scripts (21 daily, 29 one day a week), I take my meds as directed, so I guess my body is in a great big flare. I go so my Rheumy tomorrow, so I am holding out for further treatment. All of my joints are very painful, swelling, fatigue, ...Anyway, I guess since my pain threshold is high, I really must be hurting. Just know that you are not alone. Please contact your dr. to see what can be done for your pain and issues, I hate to suffer and want to see no one else to have to suffer either. I can't give up, my dh and girls need me.
Carlette- don't be scared of prednisone. It is a good drug, that has some side effects that no one wants to have. I have been on it for about ten years and am told that I am a pred lifer. Hopefully, you will only have to be on it for a little while and then low dose off of it.
To All, have a great day or at least, better than your worst. Take care.
Off subject: I made it to my 1st MS walk this weekend in SC, I stayed in my wheelie, my family and friends walked, it was great to see the participation!:)
Smhiles
Ordy,
Hello
I have RA and am in a never ending flare....taking arava and enbrel..now it looks lilke fibromyalgia is also rearing its ugly head
What do I do.....
I hurt all day everyday....and it even hurts to hug sometimes
I hate taking medications because I am on alot of them I have thyroid auto immune issues etc etc.
I feel alone in this circle of pain.
[/QUOTE]see my msg above re lyrica rose
[QUOTE=rosecrichton]NEW MED FOR FIBRO:
just read in to-day's newspaper about new med for above......anyone ever hear about LYRICA.......pregablin. this news item came from Washington..
rose
[/QUOTE]
I was on gabapentin but was having an enormous amount of swelling in the legs and feet to the point of my ankles looking like tree trunks. My Dr switched me to lyrica and that issue has resolved itself plus I feel lyrica is equally as effective if not better than gabapentin.
[QUOTE=Carlette]I have fibromaylgia and RA I am scared because my doctor wants to put me on prednisone. I hear its a terrible drug. I am in pain all the time. Muscle relaxer help with the stiffness[/QUOTE]
DEAR CARLETTE,
It is quite normal for the Dr. to begin helping you with prednisone. I was afraid too. While you are feeling afraid and suffering, I hope that you have someone who can help you navigate through this time with their memory, as it is easy to forget if you took your meds. My Husband took over the control of my drugs until I got myself under control. The drug does have many side effects, and Doctors don't usually take the time to explain all the problems from this drug. It can really upset your stomach first of all, so make sure you are taking it with food and perhaps an Rx for that. Another side effect that I considered important was long term side effects of this drug. Hopefully you will not have to take it long term, only time will tell; but I read in the Lupus newsletter that a woman taking long term perdnisone was wheel chair bound because of her long time use. When people ask me about prednisone I tell them "its a miracle drug, with deadly effects." So always question the Doctor. Also, no one told me I wouldn't be able to sleep, so I was up for days until I said something. I learned to take a list of questions and hand the list to the Dr. and they like it too. After 17 yrs with Lupus, Ra, Fibro, Kidney Nephritis, cluster migraines- I feel your pain. The good news is that there are many things to help us who suffer. No cure but we have come a long way, so have hope. Now I say, "I'm living with..."
I'm a newbie on this website too; wish I had known about it many years before, but have been warmly welcomed. Consider yourself
Sorry you are soooooooo young and so sick. I got sick when I was 31 with CFS, Fibro came 8 years later.........I am now 59. I have only gotten much worse.....AGE I SUPPOSE. I'm glad to hear that SOME get better. When you add the OLDER AGE stuff to it.........it seems to have whipped me the last few years. I HATE PREDISONE and steriods of all kinds........though they are miracle drugs when you need them, I'm not so sure that that's not what gave me this illness, when I was taking them for allergy. THEY WILL DESTROY your muscles in the long run. Lots of bad long term affects to the body. Do your google for side affects, long term affects and make your decision from there. I take TRAUMEEL for inflammation.......homepathic.......best thing I've ever taken for it.........NO SIDE AFFECTS or tummy problems. I take CORAL CALCIUM. Magnesium........malic acid.....omega 3, MSM with Glucosamine, and about 99 other supplements :) :) :) along with my meds. I have finally excepted help from stronger pain meds, which I also hate.....but after 30 years got DESPERATE. I'm also a lightning strike survivor.............so I have alll those issues.....I think it FRIED my immune system. I wish you well...........there's lots of seasoned folks with great knowledge and EXPERIENCE here. EVERYONE IS DIFFERENT.....varying degrees of the illness.......so some things work for some, but not for others and visa versa.........LOLOLOL We're pulling for you. DON'T FORGET YOUR GENTLE STRETCHES/YOGA.............it will get you going if you keep MOVING !
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