Well, I had my rheumy review today. He cannot account for my persistent fatigue and poor effort tolerance, other than to repeat his suggestion that I have developed fibromyalgia since my UCTD diagnosis.
I repeated my counter-suggestion that it seemed more likely that it might be related to the steroid treatment and adrenal function.
Conclusion = he prescribed gabapentin to see if improved sleep quality would resolve the problem, but also agreed to do an endocrinology referral.
Overall, it feels like two steps forwards, one and a half steps back. Since my sleep seems OK and I have no pain, I am dubious about tossing gabapentin into the mix, and it would be nice to have a rheumy who was a bit more proactive/informed about steroid therapeutics. On the plus side, by Xmas I might have got an appointment with an endocrinologist...
Any thoughts, experiences welcome x
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My experience of gabapentin: dizziness, eye-rolling need to sleep, intense dreams followed by fully awake hallucinations. I didn't even titrate up to the full dose. Too busy watching interesting knitted objects walk around the room to notice any pain relief. Now, while the dreams and hallucinations were amusing, I had no intention of experiencing more.
It helps lots of other people I understand. I just have strange brain wiring 😂
Your appt sounds very frustrating. Sorry about that x
Sorry. I am an outlier in terms of this med, but it's frustrating that you feel your sleep is OK and many do find the stuff makes them sleepy. In my case I'm pretty sure it was an auto-write prescription. Locum GP. First thing that came to his mind. My usual GP came back from holiday to say he was thankful I stopped it so soon.
Let's hope you get an endo referral faster than expected x
Edited to add. Gabs was given to me for pain, not sleep.
Hello. Your post just cropped up before I logged off. I am sorry that it wasn't more helpful but I know you were expecting it. I am useless to you, as I have no knowledge of gebapentin. My sister has fibro and isn't under a rheumy consultant, just her GP and a gynacologist & urologist. I have no idea what meds she is on, except for lots of pain relief and she seems to spend most of her days in bed in pain. If you aren't suffering pain, I doubt it's fibro. There are special pain points used to diagnose fibro aren't there? Did he exam you for those? I hope you get better replies, anyway. Plus another specialty doctor's view can't hurt can it. Which hospital do you attend? And have you ever had a second opinion? I can't remember, you may have said before, but my memory is shocking. Wendy x
I havent sought a second rheumy opinion - being under cardio and resp as well as rheumy, plus having a neuro appmt in the pipeline seemed like enough to be going on with! He did poke me for pain and I was able to report none. I can see that improved sleep quality might be helpful though...? x
I know what you mean, you have enough appts to be going on with. Sometimes we can't juggle any more balls. I guess you're right, only choice is to try it and see if it helps. Hate starting new drugs though. Daunting prospect. I have everything crossed that it does help. x
Sorry to hear of your review of latest appointment.
I must say, I suffered same experience as Lupiknits, on gabapentin. I was prescribed gabapentin, for sciatica and 3 prolapse discs. I took it for 4 days.. OMG, what a ride!
I had not slept, as the sciatica pain, was way off the scale. No sleep, I could not stand, sit, lay.. yes, I did finally sleep, after taking gabapentin. But, I literally saw my whole life previous, flash, before my eyes, I was climbing the walls, sleeping?waking? Really not sure! Hallucinations were so vivid, so frightening..... though, I also agree with Lupiknits, other people really do benefit from them, so I guess trial and error...
Interestingly, I met a lady in church, a few weeks after my experience, she had sciatica same time as I did. Her husband called 111 paramedics arrived, gave her a shot of morphine, took her to A/E where, she tells me, she slept like a baby, woke feeling so refreshed, she was discharged home, with a letter inviting her for physio. Oh, I should be so lucky!!! I wish I knew how, and who, makes the decision on what, when, and why, to prescribe to patients.
My sister had a mastectomy, and suffers a little neuropathy pain, in her arm and hand. She was prescribed gabapentin recently, and we agreed it was probably the right med for her. Within 48 hrs, her ankle swelled up and she was unable to walk. Needless to say, she stopped it straight away. Read the side effect leaflet and sure enough, she tells me, swelling of ankles on it! So, appears very hit and miss whatever our complaint...
The person who "developed" the original fibromyalgia diagnosis should be shot. And actually - he has said he regrets it! It must be the most misused option in medicine! Closely followed I suspect by gabapentin. We meet numpties offering it for patients dx'd with PMR. Which, whatever it is, is NOT nerve pain!
Sorry about your Rheumy review. It can be tough when we want more help than we're getting!. I take Gabapentin for nerve pain and am on the maximum dose without side effects. It's a case of trying it and if you do you start on lowest dose and if tolerated you increase in three to four days time. Usually it's given for pain so you keep titrating till you get relief but bit tricky when you don't have pain!. I do think Fibro diagnosis is given when doctors are not sure and feel patient needs a label for their symptoms!. If your Rheumy does the endocrinologist referral himself it will be quicker as consultant to consultant. Hope it will be as you need to make progress, sorry Rheumy wasn't helpful re the steroids effects!. All the best. x
Yes, here's hoping it will speed the referral up. I think I am going to keep a careful sleep v symptoms journal for the next couple of weeks to see if there is as close a relationship as my rheumy is proposing. That'll help me decide. As you say, he also said I should titrate up as it goes x
I think whisper it that's a very good idea. You've got to feel happy in your own mind your doing the right thing. It's more likely to work. Keep us posted how your doing. X
Wow. It's quite frightening reading of all these symptoms with Gabapentin. I was on it for a while and luckily never had any problems. It didn't do any good, never really helped, but I didn't have any side effects. Just thought I'd mention that as the majority seem to have had really bad side effects. Not everyone is the same and people do react differently to meds so I don't want you to worry that you will be having a bad time before you even try it. You never know, it might help. Fingers crossed tightly for you.
As someone already said, it's unlikely to be fibro without pain. I do think that a lot of doctors use this when they don't know exactly or you don't tick all the boxes for something definitive. Fatigue is classic with autoimmune things though so I'm surprised your rheumy cannot account for it.
Maybe when you're feeling up to it a second opinion might be justified?
Hope you get some good quality restorative sleep. X
Thanks georgiegirl. Yes, I guess its always going to be the case that people who have had a bad experience are more motivated to tell others, so it is useful to hear from those that haven't. regardless of my scepticism, I am going to put all my efforts into improving my sleep now, and will consider the gabapentin when I have seen how that goes. Thanks again x
Thanks Lou, as I have said before, my rheumy's suggestion of FM came completely out of the blue and seemed to reflect nothing other than he had run out of ideas. It is so difficult to disentangle the symptoms of the primary illness, the impact of the treatments and the drug side-effects isn't it? Your experience is really interesting. x
I dont see the point of gabapentin either if you're sleeping and not in any pain, it doesnt make sense, unless he had other things in mind
My rheumatologist prescribed it for me earlier this year because I WAS having sleep probs and pain. He said it would help with what he thought was tendonitis going on and possible bursitis in my joints. It has helped some. He explained that gabapentin was normally used for epilepsy but that it wasnt very effective, however it would help with "nerve pain" and so its on my repeat prescription. I dont use it regularly, just when I feel the need for it. Amitrypt was stopped because of the dry mouth side effects, I have primary sjogrens...
Thanks. When I asked what gabapentin would do, my rheumy was vague. "It's a neuromodulator. It may be that your brain patterning has got confused and you are failing to enter the deep sleep phase when you sleep and this is causing disruption.....no refreshing sleep...." I did ask a few more questions to try to get a clearer answer, but eventually stopped as it was becoming awkward. I'm actually quite open to the idea that my circadian cycles have been disrupted and I am not replenishing stores of key neurotransmitters or hormones or whatever. My rheumy might well be correct, but it is frustrating that he can't seem to explain his thinking...
I was on gabapentin for 2 years prescribed by the gp. A pain specialist has just taken me off them and put me on pregablin full strength. I think it's a horses for courses like all meds xxx
Neuromodulator...thats what my rheumy said!! then he said nerve pain so I could understand
It hasnt helped with sleep much..refreshing sleep seems to be a thing of the past with me as well, but it has helped with the discomfort and doesnt make my mouth feel any worse than it already does..so for now I'm sticking with it
I have fibro and know several people who have been on gabapentin. They have all gained weight. Some as much as 3 stones. If your sleep is ok and you have no pain then I can't see how gaba would do anything other than give you more problems! Personally I would say don't take it. xx
This seems weird ... as far as I know, Gabapentin is used primarily to treat neurological issues. In this case, it would be for neuropathic pain. It makes you crazy sleepy and many people have little to no energy on it. But, it's definitely in no way a first line sleep medication. Seen enough neurologists to know that.
Be careful with gabapentin, if you find it does not help do not stop taking. As with inceasing the dosage it has to be done gradually. I made the mistake when on high dose, I had a very sore dry mouth, I went to my gp , I was in a bit of a mess in a great deal of discomfort, I thought the gp said to stop the hydrox and gabapentin , for a few days to see if the condition improved. I did this , 2 days later I was in a full blown anxiety and panic attacks, I went to out of hours at 11.30pm at night and was given diasapan, this worked to help me sleep that night but the following day it was still bad, I would not let my husband out if my sight and was very anxious, I ring out ofvhours again being a bank holiday weekend and explained my situation, was told to restart the gabapentin again as I should not have stopped taking it,you have to reduce withdraw over time. I restarted on 75mg twice a day and soon returned to normal. I Am still on this dose now and am reluctant to stop with the fear of the return of the panic attacks. This may not affect everyone this way, but just be aware of one of the side affects. Sorry if a long reply but I feel you should have info.
I agree with others here. Seems odd that your doctor would suspect Fibro if you have no pain. Is it possible the fatigue is related to a flare up (or beginnings of a flare up) of your UCTD? I have also been tapering off steroids, and my rheumy told me that one side effect of withdrawal is feeling tired, particularly in the morning. However, I also feel the same when my lupus flares up! I am also anemic with low iron, so there are possibly many things contributing in my case.
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