Fibromyalgia today

Hi there,

Does anybody have any up to date advice ? Diagnosed 15 years ago and have spent the last 15 years trying to pretend I didn't have it.

Running out of steam now as it's getting so bad I'm having to give up my current job in January and really don't know what the future holds !

Unsympathetic gp recently forced me to try gabapentin but I just couldn't cope with the side effects .

I. On paracetamol, ibuprofen ,amitryptyline 50 mg at night and can't tolerate much else that's been tried . I also have bulging discs, prolapsed discs and severe migraines at least 3 a week. Insomnia is a killer too at the moment !

Any ideas ?

16 Replies

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  • Meditation relaxation warm baths muscle relaxers there is only so much you can do for it. In major flare at the moment so I can't think straight. Thank you spell check and voice text. I wish there were something more I could offer I know others on this group will help you is a very unique and wonderful group of people

  • Thank you, I have started yoga two weeks ago and migraines etc have actually got worse but I have managed to relax with her at the end of the session so I guess that's a major step for me.

    So sorry you're struggling so much at the moment. People keep asking me if it's the fibro upsetting the back or vice versa but I just don't know any more !

    Take care

  • Indeed you all are. Hope you have some relief soon regno. I think I may be joining you. Bones are on fire 🔥 xx 😊 🚒

  • Hi Nicky

    I am very intolerant of a lot of medication but after lots of sickness and sleepiness and headaches I have found Targinact 10mg twice a day fir pain and arcoxia 90mg once daily topped by 20mg of amitriptyline for bed is allowing me to cope xx Targ is opiate and arco is anti inflammatory xx

    The targinact in particular has got me back on my feet - not pain free but manageable xx

    Hope you find a balance soon. My GP was excellent - had me coming in every 2,weeks until we got a balance xx 😊

  • Thanks very much for the info , I will look into them. So glad you've got an understanding gp , I think that makes all the difference.

    I'm not enjoying moaning but I wait an hour plus over my appointment time and the. I'm in and out in two minutes flat , sometimes you need to ask questions !

    Take care

  • Good luck Nicky

    I know lots of people who have very long GP wait times - my specialist appointments are like that.

    I think I am very lucky as I live in a small village and our GP covers several villages but not as busy as larger towns.

    You can also get nurse appts same day if you can't wait for GP.

    I can book several weeks in advance or sometimes if I phone first thing I can get in around 11 am if it is urgent - don't do that really but it is handy if you need it.

    They are very organised and my GP is relatively new to the surgery - appears to be very knowledgable - I have advised him I don't want to waste my time with any more specialists, I am happy to try things his way.

    Try writing a little list before your next visit - it may help - especially with the fibro fog xx

    I do know a lot of surgeries have been given timescales by the Government - it is ridiculous - they are treating people like commodities xx

    Good luck and I really recommend the Targinact in particular - don't feel any side effects from it whatsoever - perhaps a bit more thirsty than usual but that is easy to resolve xx

  • I guess I am hoping that does not happen. I am still living in the hope that if I pace myself, eat healthily, and use relaxation - along with the medication that I can reach a balance - maybe even start to feel well - I haven't given up on that idea xx

  • I should say that I needed the medication to get me back on my feet after I was bed ridden in January, took me a long time but I reached a manageable level in work etc and now they have messed with my hours I slipping into a bad flare

    up - that affirms to me that we shouldn't just rely on medication, we need to find a work-life balance that works for us too - and that will be different for all of us xx ;-)

  • Are you allowed to change gp's?

  • Hi Nickycb

    I am so genuinely sorry to read that and I sincerely hope that you can find the answers that you so desperately desire and deserve. I use a TENS Machine, and I find this very helpful in combating excess pain levels.

    I want to genuinely and sincerely wish you all the best of luck.

    All my hopes and dreams for you

    Ken

  • Feel for you, I gave job up in January. Luckily my gp is wonderful. I am on all the meds you've mentioned plus omoprazol and naproxen. 2 discs c4 and c5 arthritis had for 20 years now :( recently had lipoma removed had prayed it would give me relief from right arm, suppose it's stopped massive pain running thru arm but unfortunately still hurting. Don't know where to put myself. Gabapentin gp said most fibro patients are on this. Is helping a little I know as if I've forgotten to take them at night due to literally falling asleep with exhaustion don't I know it the next morning. I'm on 400 mg 4 times a day and he wants me to eventually up it to 4 4 times a day...Omg I'm a walking chemist...something I think we all have to accept very difficult to do though. I'm awaiting pain management clinic with suggestions of injections in my neck area. Had them years ago for the arthritis but didn't do me any good. Will see what happens this time when I have them. Sorry can't give you anything positive really Hope you feel little better soon x

  • Hi Nicky,

    I am sorry to hear about your suffering, all of feel that pain one is worse than other. I used to suffer really bad, and taking so many medication to include opiod and morphine..but after searching the net..I start to read and share for people who has experienced and successfully overcome with natural therapy so I copy them..its work for me..as I just hate the side effect of the drug I was taking, so I start to follow the people by taking supplements such as; magnesium oil, ginger, tumeric, selenium and omega 3..my pain getting lesser and lesser I can cope better, the negative side is..the NHS won't pay and a good quality of supplements come costly. But I was suffering so much..I know that with our condition it can't be cured we just keep maintaining the pain, hence I chose to join these people to go to this route..I hope this information help...

  • Lyrica and Vicodin has helped a lot . I don't take them together, though

  • With the migraines, are you drinking enough water evey day? And have you changed your pillow? Another thing that's helped me is temazepam for sleep. I don't take it every night, but you don't wake up groggy.15 mg..need script. Maybe you need a complete change of meds. Will they prescribe Lyrica? I know its expensive, but it worked on me better than gabapentin. And they used to prescribe amytrip. when they had nothing else. The Lyrica helps me with the muscle fatigue. If you get it, don't give up on it, I had to go up to almost the highest dose. 150mg 3 x day, gradually. And gabapentin works for a lot a people, but u need to start out on a low dose for that too. Maybe your dose was too high. Maybe it interacted with you're amytrip. Ask the doc to wean you off amytrip. and try temazepam for sleep. If you don't sleep, fibro will kick your butt! I know you have different medical treatment in the UK, but I hope this helps. Hugs

  • I take MST, Duluxotine, co coydmol and tramadol I also take Diazipam for restless Leg syndrome and have recently started magnesium supplements which seem to help and buy one get one for a penny at Holland and Barret! Plus Ambien to help sleep?

  • I feel for you. I too had to give up my job because of fibro and lots of other stuff . I'm on opiates amytriptyline and co-coda old and lots of other stuff .Immfinding that the ibuprofen gel maximum strength which doctor prescribes really helps .Most pills only take the edge off the pain .I don't sleep very much and that dosent help at all.Hope you get some help .xx

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