I haven't been on the board in quite some time. I start to read and I just get so exhausted. The Cymbalta that was helping me just seems to have quit. My mood remains better, but all the pain is back. All night long I hurt terribly. I've kept up with my exercises which were also helping, but don't seem to be any more. I've been walking, but then I am really, really exhausted the next day. The walks are very short so I don't see how I could be over doing it. The tests say I don't have neuropathy, but that's what my symptoms seem to be. It hurts to touch my skin, to touch my toes. My legs are terribly swollen just like they used to be before my surgery. I am tapering down on the predisone, but the pain and swelling remains the same whether I'm at 10 mg or 9 mg. I see the pain specialist tomorrow, the physiologist on Thursday and the primary on Friday. These doctors just confuse me. I used to be able to tell when I was flaring and that helped me cope. Now, I don't know what is happening. I don't see the Rheumy for nearly another month.
Deanna, It's good to hear from you. I wish that there was someway that I could take the pain away. It's so hard to think or do anything when you're hurting like that.
The only thing that I can do is give you a big cyber hug.
Regarding PN the fancy neuros tests showed negative but more than one Dr. just using a broken toothpick ran it over my feet and it was obvious that I could not feel it in many areas. My PCP used a simple tool that she would start to vibrate and held it on my foot then I was to tell her when I stopped feeling it. When I told her that I could no longer feel it vibrating she would let me feel it elsewhere to see how much it was still vibrating! So much for the Nerve Conduction Tests. I hope things get better for you soon. Deanna, I'm sorry you are feeling so lousy. Try to rest and push your drs. to do something to help you with the pain and fatigue when you go for your appts. The emg/ncv doesn't apply to small fiber (sensory) neuropathy. You can have a normal emg/ncv and still have sensory neuropathy. My neuro uses the vibration test and the pinprick to check for sensory neuropathy. My emg on my arms was normal even though the small fiber sensory nerves in my hands are dying. You are not wrong-you do have neuropathy. I wonder if you are in a flare and have a lot of inflammation. It sounds like it. Have they checked your sed rate lately? Rest and pester those doctors to do something for you. You are in my prayers.
Laker dear deanna, oh no!, I'm so sorry yu are hurting and you feel you ar going backwards....that's an awful feeling. Are yu sure u can't phone the doctor, send him a fax and let him/her know you are in pain??? I'd stay with the higher does of pred, as it seems like such a little pill and such a little amount , but boy I've found a big difference between one pill or one/half of a pill in the way I feel. I went down by a half and now my elbow is popping, couldn't raise it above my head today, and my fingers are stiff! One half even of this stuff makes a big difference. I'm going to try 1/4ths. I hope you can call for help, Sarah Deanna, you can't figure it out, I can. I had worst experience 20 years ago. It is because drugs have dwindle its effectiveness and body is weakening with such symptoms like fatigue, dried mounth, weak, restless, skin is warm and dried. Also your stools are dark, hard and dried. You will expect frequent attacks/flares as the disease has immuned to currect drugs and capitalizing on your body weakness. Appropriate herbs override the pain. Herbs and correct natural foods gradually reverse the severity to no threat for many years. I am very realistic herbs and correct natural foods EXPEL the disease and rejuvenate back my healthy body NOT drugs for chronic diseases. You can have surgeries and heavy bombardments to the disease but the disease can hide and re-surface in your blood streams and live in your body always waiting to launch an attack when time is right. Deanna- Hi we've really missed you around here. Sorry you have been not so good.I hope your rhuemy appointment helps although a month seems like a lifetime when you feel so bad.Mine is next month too and i am hoping they can shed some light on the neuro problems too. Take care , you are in my thoughts. Lisa Deanna, Maybe you should check with another neuro. It is wrong for yours to give up and offer you no relief. Mine says the neuropathy is from the vasculitis. The small blood vessels are inflamed and so the small nerves are not being supplied and are dying. He is trying to treat the neuropathy by treating the vasculitis and getting the inflammation under control Not working for me yet either. I need to be on lots of pred to get the inflammation down. I take nortryptiline which helps with the nerve pain. I go to a university neuromuscular clinic now. The couple neurologists I saw locally had given up on me but the docs at the university have been able to help. Maybe you need to go to a specialty clinic. Hang in there. Laker Deanna, I was told the neuropathy can come and go with inflamation. Maybe you just didn't have inflammation on the day you were tested. Good to see you. I hope we talk again soon. I have had the flu, it seems like forever, so I have not been on much. I am hoping to feel better by Friday for my Humira injection
Deanna, I finally checked in at AI and came across your April 25 entry. Do you think you might have fibromyalgia on top of everything else? It can cause widespread pain and weird trembling. The neurologist who tested me felt that a lot of my pain and weakness was not RA or Vasculitis, but fibro. Of course, nothing in the tests will show fibro so it's a matter of eliminating other possibilities. Also, fibro can really rear its ugly head after any kind of exercise. You have to take it in slow increments.
(((Deanna))) Please email me a list of your meds and symptoms and I will go do the research on your meds and possible side effects and interactions. Lorster and I are doing this for Micheleb trying to come up with something for and you would not believe what we found for side effects and interactions with all the meds she is taking. Deanna- Not to worry you but have you thought of cushings syndrome
Cushing's syndrome occurs when the body's tissues are exposed to excessive levels of cortisol for long periods of time. Many people suffer the symptoms of Cushing's syndrome because they take glucocorticoid hormones such as prednisone for asthma, rheumatoid arthritis, lupus and other inflammatory diseases, or for immunosuppression after transplantation The symptoms are quite excessive but I read about someone having it who didnt get the weight gain around the middle and other stuff, she had fatigue, tremors, pain on touch, painful joints.........and some other syptoms that she put down to her age such as missed periods and depression. Its probably not what you have but it good for everyone on long term prednisone to know about cushings
But if I believe the neurologist that says that neuropathy is too bad for him to treat me and a waste of time to treat me, then what do I do? They have left me hanging out here with no positive actions to take.
Marisa thanks for the hugs. Bonny and Laker thank you for the explanations. Maybe I just need to read up on this some more.
Bonny, they tried the Lyrica and it made the tremors a lot worse. One night was more than I could handle.
Deanna, you have been missed around here, so sorry to hear about your problems. Maybe you could increase the dosage of Cymbalta, if you started at a low dose? Forty and sixty mgs are often given. Just a thought. Have you tried Neurontin? Don't know how similar it is to Lyrica, but I know it helped me a lot. Pat
I am a relative newbie to all this, and have not got the experience to offer you any advice, but I do sooo wish some answers for you.
I hope that you get some satisfaction with your appointments this week.
I really hope at least one of the doctors has some answers for you. Maybe ask about the compression stockings, they seem to be helping me a little, although they may hurt you too much if it hurts just to touch your feet. Is your skin red where it hurts? If your sed rate is still high, ask about a toradol shot, really helps with the inflammation and pain.
I know you are hurting really badly but please try to update us when you can, we will be worried about you. Hugs and love
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