I did really well all day yesterday, cleaning housing, cooking, enjoying my son's visit, phone calls from friends and family. It was a really great day. I didn't have any tremors for the first time is quite awhile, hardly any pain, able to leap tall building with a single bound -- you know, one of those rare, beautiful days.
Oh, but the night was really bad. It was a nightmare of unrelenting pain and tremors. My legs think that there is a race that needs to be run and they just shake, rattle and roll. It makes everything else hurt. Knees with severe OA and OA in the spine just can't take this roller coaster ride.
The Neurotin helps significantly with the pain in my hands, but tremors is a side effect. And, they haven't given me the specifics for why I am having these severe tremors.
I feel like someone beat me up last night. Can I crawl in a hole and die now?
No, wait. I still have Thanksgiving leftovers that beckon me. Ah, a reason to keep living. Painkillers, yes, that does help. Glad there isn's anything stronger available than Vicodin or I would have taken it. I was very close to going to the ER last night.
Does anyone else have this degree of problem? I am so worried about it being neuropathy, MS or Parkinsons. I shake whether I am lying down, sitting or standing. This only makes it harder to go out in public.
I hope you feel better soon.
My son took Neurontin and other similar drugs for what, at the time, was diagnosed as Bipolar disorder. In his case, tremors was a significant side effect. We even had to take him to the ER once because his body sort of froze up and it was very painful. They are very powerful drugs and can effect your nervous system. Eventually, he refused to continue taking them. I should say though that Neurontin was not the worst. Seroquel effected him a lot more. So, before worrying too much about nervous system diseases, I would ask more questions about the Neurontin, and alternatives if it's causing you a lot of problems.
Alan
HHMMM...yeah Deanna....sounds like there is still alot to be determined with you. If you are still having this much pain (and you know I am the last one to recommend an ER trip to anyone) you need to go! I dont know how much long term relief the ER doc is gonna get for you..but if they have to call your doctors or you have to go see your doctor for a follow up and they see that you are having enough troubles to send you to the ER then maybe they will get the lead out of their butts and start taking this prolem a little more seriously and with more urgency.
I am home most of the day today if you want to call me...or I can call you back so there is no long distance charge.
I've since learned that RA, Sjogren's and Vasculitis can all cause nerve damage. Great, I have all three. Plus, they previously tested me about 5 years ago for MS. I've had the symptoms with my eyes and tremors before. These tremors are so strange. I can be lay down and have them 3-4 hours, be in horrible pain and then suddenly they just stop. I tremor in my hands and arms as well. Today, it is settled down enough that I don't feel the urgency to go to the ER. I am just really drowsy from the medication. I'll probably give the doctor a call on Monday. You know how hard it is to get a response on the holidays. But I will go to the ER if it gets worse. Unfortunately, no. I have to wait until I start getting my disability and get the later version. I've just been breaking down my computer time in small doses, wearing compression gloves and wrist braces. That is one of the reasons the Neurotin gets me a bit excited. It seems to relieve some of my pain in other areas so well. I know what Alan is saying about the trouble with this medication. But the other alternatives are to try medicines for MS or Parkinsons or go on the opiate pain killers. My daughter was on the Seroquel and had problems with it too. The Neurotin also makes me more drowsy and tired. One hardly needs that when you already have a lot of fatigue problems. I just don't understand why everything is incureable. Alan Deanna, I hope you're feeling better today. I think those tremors would be scary and upsetting. Does it tend to make you tense all over in response to that out of control feeling? Waking up feeling like you were beat up is horrible. What a rude addition to such a beautiful day. When do you go back to the doctor? I hope you can soon rule out some of the scarier causes of the tremors. Not that this would help the tremors themselves, but the knowledge would be some comfort. I hope you get some more of those beautiful days soon! Thanks everyone for their concern. The tremors have not come back as bad. Thank goodness. Lots of activity, like a full Thanksgiving day, seems to aggravate them. Alan, you haven't discouraged me at all. I am getting sufficient relief from the Neurotin to want to continue it's use. But it is odd because it seems to help the upper part of my body and aggravate the lower half. Maybe I should go for the split personality thing and just separate the two. RKGal, I don't have any feeling of being out of control. It just happens. Sometimes, I am not aware of them happening. I just look down at my legs and they are moving. Other times, I cannot do anything but watch them tremor and the muscles contract over and over again. I've found that they happen when I am lying down. But also can happen when I'm standing. I don't see the neurologist for another 5 weeks. I don't think I want to wait that long for some kind of relief. I imagine I will be calling him on Monday. They are supposed to be adding PT and a MRI. I'm waiting on those. I would be some relief to know what is causing them. PT itself didn't, but icing me sure did. Also, yoga caused them. That was embarassing. I had these problems early on and they did all these tests for MS and then just kind of dropped it. It seems strange that the neurologist did not order any MRIs himself or nerve conduction tests. It may be that he already has a good idea what is happening. But he is not telling me. I did a lot research online and found the Sjogren's, Vasculitis and RA can all cause these problems. The Neurologist just kept saying he was sorry that I had all these diseases. I guess I'm past the point where they think it's all in my head. No, I haven't heard anything about the MRI (ordered by the pain specialist) or the PT (ordered by the neurologist). That's another reason to call on Monday. I also haven't gotten a response on a walker from my primary. I hurt like crazy today and they are starting again. They woke me up in the night and I had to take something for pain, again. But that doesn't really help. I promise, promise to go to the ER if they go full blast again. I want someone else to see them at their worst. It just takes time to find an answer and with the holidays, things move like molasses. But I do find it depressing. My muscles keep contracting involutarily. So glad I'm not out in public. But hey, my legs and butt are starting to really look tight. Wonder if I can get my body to work on my stomach muscles.
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