Someone believes me at last..

All your fibromyalgia experiences, questions and answers.

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Someone believes me at last..

Postby smig » Wed Aug 13, 2014 3:42 pm

Today I went to see the rheumatologist who has confirmed that I do have Fibromyalgia. For me the diagnosis came with a sigh of relief, just getting someone to believe me is a real weight off my shoulders(no pun intended).
I have a few questions if you could help me.
With regard to my meds... I have been on Tramadol for some time and need to come off them as I work in a safety critical job and my employer can't really allow me to work on this amount of Tramadol. The Dr says that there are other less addictive medications that I can now take for the pain along with Amitriptyline for sleeping problems that I am having too, The Dr tells me that he can't just stop the Tramadol all at once and has given me a further months supply again, am i to assume that it will take at least a month to ween me off Tramadol? before moving onto Lyrica (pregabalin) I think. I wonder if anyone has experience with Lyrica and Amitriptyline?

Thanks for all your help in advance :-D
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Re: Someone believes me at last..

Postby rich44 » Wed Aug 13, 2014 4:05 pm

I've been on Lyrica worked like a miracle for 9 months or so then despite upping the dosage repeatedly didn't work again, but many people do say it helps them.

Good luck with it I couldn't stick the tramadol, made me sick. Didn't notice any drowsiness etc with them even at 400mg a day.
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Re: Someone believes me at last..

Postby iblinkin » Wed Aug 13, 2014 4:34 pm

Lyrica did not work for me and caused me to put on over 40lbs of weight and the weight came off after i stopped taking it and with dieting of course which i also tried dieting while on it.
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Re: Someone believes me at last..

Postby Lindenp » Wed Aug 13, 2014 5:34 pm

I felt exactly like that when I got a diagnosis as well. Just relief that like you said 'someone believes me'. :lol:

I am currently on Tramadol for gallstone pain and now for the after affects of having the gall bladder removed. I have never been able to take Lyrica as I have problems with depression. I take co-codamol 30mg/500mg 8 tabs per day for the Fibro pain and also Amytriptyline 10mg & 25mg a day. I also take Gabapentin which is good for pain too. :yikes:

Hope you get your meds sorted soon. It is always a hit and miss thing for everyone to find out what helps/works for each individual.

Gentle Hugs :hugs: :hugs: :hugs: :hugs:
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Re: Someone believes me at last..

Postby Theresa34 » Wed Aug 13, 2014 7:22 pm

I've read that its addictive to some people. I'm not. I've been on them and off them without any issues to addiction. I've only just come off them for good now as its causing my a lot of constipation, my only gripe with them :evil:
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: Someone believes me at last..

Postby Tally1068 » Wed Aug 13, 2014 7:52 pm

Theresa34 wrote:I've read that its addictive to some people. I'm not. I've been on them and off them without any issues to addiction. I've only just come off them for good now as its causing my a lot of constipation, my only gripe with them :evil:

I'm the same. I don't even get constipated but find they dull the pain most of the time. I've never experienced a "high" either ( damn, you'd think there was something to appreciate...(just kidding) nor do I get any withdrawal symptoms. I've been on 400mgs for over 5 years now.
If I'm having a flare up I take cocodomol which I find work better than the tramadol, but they do make me constipated. With the low dose of amitriptyline this is usually OK but if I need a burst of energy and pain relief I increase my steroids ( not prescribed for fibromyalgia I hasten to add, but for COPD).

I'm sure the medical bods would have a fit, but it means, once in a blue moon I might get to have a Social night. :-D I've managed 2 this year, a wedding and a trip to our local theatre. What a riveting life hey? :mrgreen: :dogrun1: :bear-dancing:


(In no way am I endorsing taking steroids. It's just that having taken them for 50 years the damage is done. There were no steroid inhalers or nebulisers in my youth, so handfuls of prednisolone and intravenous drips were the norm.)
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Re: Someone believes me at last..

Postby macca » Mon Aug 18, 2014 1:01 pm

Hi all, my wife is very fortunate to have a very supportive GP and a few months back he spoke to her about the volume of medication that she was prescribed. At first I though this was a little odd as she's not asked for any of it, its simply amassed over a number of years, with the combination of the GP, Pain consultant, and Rheumatologist dictating the cocktail of drugs. That said its emerged that she was discussed as part of a case conference if you like, where her GP was concerned about the prescription and long term effects on her.

He spoke very openly to her about it, and I'm always present also. He suggested that he wanted her to think about what she could remove or at least reduce and to see how it went at her own pace, i.e. very far from a heavy handed approach. So its been a journey for her with some success in taking some meds out of the picture, mixed success with others in that there was a reduction but without success and so an increase was necessary again.

Pregabalin is the real question mark. Without question for her this medication is significant in managing her pain levels and it has been the most effective medication for this purpose but of course the pro's don't come without the cons and for my wife weight gain has been a real problem. She is only 4'10" and has always had a petite frame but over the last 2 years has struggled though putting on over 2 stone, and this is in spite of being very careful with diet. She has problematic hips (one having already been replaced) and has noticed the increased weight having an impact on hip and knee joints.

The GP wanted her to consider reducing Pregablin but recognised that this had to be done gradually and no doubt acknowleged that there had already been a significant achievement in removing / reducing other meds. That said she's now begun to reduce the volume of pregabalin dropping from 250mg a day to 200mg. What the effect of this will be is very much the unknown at the moment. I'm guessing there will be a sweet spot where she may be able to lose some weight albeit maybe not as much as she'd like, but be able to manage the pain with the addition of coping strategies and being sensible about what she does.

Time will very much tell of course, but I've been very impressed with her GP and his pointed but gentle approach with her so far.

Mac
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Re: Someone believes me at last..

Postby MichelleJ » Mon Aug 18, 2014 9:59 pm

Hi. Yes, I too was relieved to receive a diagnosis, at least you know what your dealing with now. Re the meds. For me, I found amitryptiline made me far more groggy and fatigued than tramadol ever did. I had a constant hang over effect from it. Tbh it really made my m.e worse cos it just increased all my symptoms (I have a joint fibro and m.e/Cfs diagnosis). That said it did work so I was on it till very recently for 4 years. I now take nortriptyline instead. Similar drug far less side effects (for me).

I don't work now but my employers didn't want me working on tramadol either but I told them tough, I'm on it, I don't have any side effects anymore cause I'm used to it now and it doesn't make me drowsy or impair my functioning. Which it never. I was totally fine with it. In the end work said fine cos my dr was telling them the same thing too. If I had the side effects then obviously I couldn't have fought to work on it but at that time I was undiagnosed and was the only thing that helped my pain. I only came off tramadol when it stopped working. I stopped it immediately never weaned and was fine. But I do tend to just go cold turkey so to speak when stopping meds. My drs always said I can. Only one I found hard coming off was duloxetine. The others I come off without issue. I'm not saying you should do the same as everyone reacts different but that's been my experience.

Lyrica never worked for me but it does for lots of people. But I did find gabapentin (a similar drug) did work well for a long time. I think it's often the case of if one doesn't work try the other cos that might work. My only issue was weight gain. I put on 4 1/2 stone on it in around a year. It's slowly coming off now but I don't expect to get back to the 8 1/2 stone I used to be.
Dx with fibromyalgia m.e/Cfs and asthma
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Re: Someone believes me at last..

Postby Butterfly8588 » Fri Aug 22, 2014 12:34 am

Hi Smig,
I was on lyrica and amitriptyline a long while ago. I found after a lot of problems that anti epilepsy tablets cause me to badly twitch, especially at night when I was trying to sleep. It got so violent that I'd actually leave the surface of the bed I jerked so hard. I'm off all medication now cos to be honest I didn't notice a difference in pain levels with any of it and the side effects were awful. All I take is the occasional 30mg of codeine with some ibuprofen for times where its unbearable or I'm feeling unable to cope. Sorry i couldn't be more help!

Take care xxx
I'm the ghost of a girl that I want to be most, I'm the shell of a girl that I used to know well.
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Re: Someone believes me at last..

Postby rich44 » Fri Aug 22, 2014 12:59 am

That happened to me, I was sitting in the living room and almost threw my phone across the room.
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Re: Someone believes me at last..

Postby Butterfly8588 » Fri Aug 22, 2014 1:07 am

Hi Rich,
It's ridiculous isn't it? I used to get so embarrassed at times because I'd be stood talking to someone and then my back would twitch which caused me to suddenly thrust my chest out! The look on their faces was priceless! I'm someone who tries to hide my problems and that certainly didn't help my cause!

Take care xxx
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Re: Someone believes me at last..

Postby smig » Tue Sep 02, 2014 7:42 pm

Thanks for all your replies...At the moment we are just Starting the pregabalin at 50mg twice a day, i am finding that i still need the Tramadol and Paracetamol too. I am going back to the Dr in about a week and hope he will increase the Pregabalin then maybe i can lower the Trams...I think we are keeping the Amitriptyline at 50mg, looks like i will continue twitching like a crazy man :-D

Thanks again, i'm glad your there

King regards


Steve :yikes:
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