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Hi I was hoping for some advice regarding meds. I have something which has symptoms the same as fibro, cfs and lots of other things. Drs keep sending me round in circles so seems I will never get a definitive answer, I am now waiting another 3 months for a rheumy appointment without being prescribed anything in the meantime however I have a few things in my cupboard from previous.

I would like to know how well amytriptlyn has worked for people regarding pain and its sister nortriptilyn, I took ami for about a week and it made me feel worse so I stopped that. I know it takes a while to work but it was the worsening of symptoms that put me off.

I've tried anticonvulsants and I don't like them and they don't like me so I won't take any of them again.

Has anyone had any benefit from any other meds, Wellbutrin I read is supposed to be good, also cymbalta, anyone tried these?

Lastly I've been reading about low dose naltrexone but can't work out if it's a bit of a scam or not, if anyone has experience with this please share.

I'm taking strong Cocodomol to get through but it's not an instant fix and it sometimes works sometimes doesn't.

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  • Posted

    Hi Chatlotte, For years Doctors didnt know what was wrong with me, i had a few things going on now i know its easier. I have Migrains / Catamenial epilepsy and Fibro . Doctors have put me on Amatriptalene and cymbalta after a while of being on them the combination has finaly started to work i am not in as much pain. I also try and help myself i take Vit D , eat regular drink plenty of water. Hope helps. Good luck . Pace yourself.
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  • Posted

    Hi Charlotte,

    Like you I too have tried Ami and it made me feel worse.... had tried it before but gave it another go for about 2 weeks, I've been moody shouting angry and low libido which wasn't great before the meds. Am on 15/500gm Cocodomol and was taking 1 Pregablin in the mornings this had no effect either...certainly never eased the pains at all. My doc doesn't want to raise the strength of cocodomol as she says they can be addictive which is fine, I understand but in the mean time I am at a loss as to what to take. The Ami helped me sleep real good thru the night and now I am back to 3 and 4am bed times. If you do try any of the meds you mentioned please let us know how you go, I have heard of most of them but never tried. Had Gabapentin in the past made me zombie like, not good.

    Wishing you well and good results with your search

    Angie x

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  • Posted

    Hiya Charlotte, poor you, really feeling for you.. gentle hugs..from across the seas....The Rhumotologist is the specialist that diagnoses Fibro, so that's great that you have an has taken years for all of us to be diagnosed..then treated..unfortunately..The only med Amitripltlyne is what I take for me a great pain free sleep..still feel a tad drowsy waking up- but fine once up..but that sleep is what makes this Fibro manageable for me. Also being as stressless as possible-it makes Fibro symptoms soo much's a key really to be stress free...only get flare ups now...but once  it was just constant pain and sleepless nights..I take it 7pm before really does work wonder, for me..that is,,we are all very different..I take 25 mg...never had it increased either ...started on 50mg but I was like a zombie...dropped to 10mg for a while-still not too good,,but 25 mg is perfect for is actually an antidepressant that works excellent for numbs the nerve ends and stops the pain from jumping on to the next nerve..hence a very painful body...the antidepressant is probably a lil bonus as most of get depressed from time to time..hope it goes Charlotte blessed..have a lovely day..:-)xxx
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    • Posted

      Hi everyone, thank you for your responses. I will let you know Angie if I find anything helpful as so far don't feel like a tolerate medications very well. I have read about lidocaine patches if anyone has a specific sore area or a few but gp wouldn't give them to me as they have to be first prescribed by a pain clinic.

      Hi Hazel, I have tried all the vitamin supplements I can think of but even though a few deficiencies I had have been corrected I don't feel any better. I can't really exercise as it aggravates things, on bad days I just can't and then on good days I don't want to as in enjoying the relief! I did magnesium supplements every day for a while and actually made myself quite ill I think.

      Hi Christine, I have seen a rheumy before and bloods were all clear but my gp thinks as I have a knee swelling issue that it is autoimmune however I am no longer thinking that as the intramuscular steroid shots didn't help anything apart from knee. Plus bloods are fine. I'm also not sure about fibro because even though I have many symptoms I'm not sure I can find 11 tender points, My whole body hurts or some days it's specific parts but not specifically the fibro map points. Is there just a run over by a steam roller disease as if so that's what I have!!! The other weird thing is pain up into my face which I haven't read many people complain of. I think I will retry the ami but I just don't want to be more tired, foggy and forgetful than I already am which on a bad day is quite horrendous.

      Thanks everyone

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  • Posted

    Hello Charlotte,

    I don't have too much to add here, as I think you have received good advice already. I will say it seems seeing rheumatologist is good, most people get their Fibro diagnosis from him. Personally he didn't give me extra help, just confirmed Docs diagnosis. As for meds the only one I take is Amitriptylene, 50gm at 5pm, which usually gives me a good nights sleep, not so much for pain, and I don't feel like a zombie when I wake up. The pain is manageable, as long as I pace myself. I know there are lots of people on here who don't take meds, and to be honest I don't think any med is a cure all. Good luck

    Take care, Anne

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