Been told I could have fibromyalgia buy the doc it's taken nearly 2yrs

I'm just looking for advise to cope with the condition really iv spent 2years fighting it and now I feel I'm losing it I have really good days still with brain fog but on my bad days the condition just gets out of control and I feel alone n helpless.seems no one around me understAnds it,anyone with a advise or anything to help me would be greatfull I'm currently started taking Lyrica for the pain in my back,neck,head and seems of helped me a lot but the bad days are destroying me

17 Replies

  • welcome! glad you found your way here! I am sure, like I, you won't feel alone for much longer! Feel free to share or ask questions and comment on others'! There is a lot you can do to manage pain and possibly even reduce pain medication in some cases. Try and do some relaxation to begin with, learn from a CD (eg Hugh Fraser) or find Mindfulness Meditation online (free from UCLA). And keep coming back! Best wishes!


  • Thank you i will try the cd and the mindfulness med, hopefully that will help me some more think it's got to that point where I need to speak to people with the same condition as my self abd hopefull get my life back that I fel iv lost

  • Welcome to the site I am sure that you will find the people here really friendly and supportive. Have you tried going to our mother site FibroAction as they have marvellous information there about everything to do with fibro. I found that Pregablin (Lyrica) was the only thing that helped me with the burning, shooting pains but unfortunately did not help muscle and joint pain but that said It is one medication I would not be without.

    I don't know whether you work or not but you will find you need to pace yourself as if you push yourself too much on your good days you will pay for it in the next few days. Do try to exercise even if you are in alot of pain even gentle exercises will help as otherwise our muscles start to seize up which causes more pain and it gets like a vicious circle. On the bad days try to distract yourself with music or doing something you enjoy even trying to paint or do puzzles really anything that will take your mind off your pain.

    Have you tried a Tens machine and have you asked to be referred to a Pain Clinic for some practical advice on how to manage things.

    Ask any questions you like as there is usually someone around who has had similar experiences. Let us know how you are getting along.x

  • Hi rose wine

    Same here lyrica feels like it's change my life started doing more things with my little girl.yes good days I go to the gym and work hard like I use to and I seem to have days a few days after and it's just a horrible cycle every week,now and again il have a horrible day that feels like it's the end of the world pain,depression,sadness,feeling helpless,then all of a sudden il feel ok ish again.think that iv finaly starting to get help from the do and now iv got this site I wnt feel alone anymore just wnt to say thank you to you all that have answered my post

  • Don't overdo it at the gym Tommc when you have good days as it can have unfortunate repercussions a few days later. If it is at all possible try to do a similar amount each day. Yes I can understand those days when everything seems to be against us pain and depression at maximum and you can't see any way out and then you have a better day and you feel hope is there again. It is like boom or bust.x

  • Thanks for the advise rose wine.tell me about il train hard sat,sun,mon,tues then wed,thrus it hits me like a brick.i have gotta a point now that I need to take it easy more with training jst so hard knowing what I can do but this stupid condition stops me lolmy main concern is the depression and anxiety that I get now and again because it comes on so sudden.also I have brain fog every single day Somedays it is easy to cope with other days I lock my self away from ppl and doing things that i enjoy.

  • Tommc I think if we get overtired which is easy with this illness that affects our mental state as well as we don't have that much energy to burn. Yes it is frightening when it comes on suddenly as you wonder what is happening. Also if you are very tired your brain fog will be worse.

    You will learn over time how to listen to your body as this is a new experience. It took me ages to realise that I could no longer go at anything like a bull at a gate and think I would be okay the next day. If I know I have something on one day if I can I leave the next day as free as possible to recover. If I have had to do something more physical I follow it up with things like paperwork so I am getting more of a balance on a day to day basis. How anyone copes with a full time job with this I don't know they must be superhuman and I take my hat off to them.x

  • I no I have the same problem I go to the gym work a full time job Full 40+hrs awl I'm now starting to put things that r more important 1st and its not all about training ever day.just one day it goes away like it arrived haha

  • I feel just like you

    I go to the gym, swimming then go in hydrotherapy pool. This makes me feel so much better, then bam. Today I feel so bad I could weep. I ache so bad in my hips,feet, hands. The list is endless. Just hope we can at least keep having some good days. I do feel extremely lucky as some on here are in such pain all the time.Just got to keep smiling and saying I'm fine because a lot of people don't believe in fibro, etc.... Xx

  • Hi Denise 123

    Lol yes def the same I get the pain mainly in my back and neck and the migraines r unreal I do find training helps but it's the days I push my self that I end up worse, i believe ppl have it worse than my self and I do feel for them,also it's the fatigue aswel jst kicks in out of no where like I have no energy lol I will get there tho had it to long to give up now after the doc has told me I have it,I'm back at docs on Thursday hopefully be sent to specialists xx

  • Hi again I take amytripiline at night every night, but I also have ibuprofen, paracetamol and tramadol. On good days I may only take one lot, but on bad days I take as much as I can. I also am low in vitamin D so take this also

    Hope this helps in some way. I don't know the meds you are on. Worth asking if not... Xx

  • Hi, you are helping thank you,need All the advise I can get.feels like iv been on my own got the past currently on lyrica taking 4tabs at night think per tab 25mmg and seems to taking the pain away abit ibuprofen seems to help my head achs a lot and eat them like sweets some days.iv also been told vit d might help so il go tithe shop tomorrow and get sunny

  • TENS made my pain much worse! so you see it is great that here we can have so many different experiences and work out way through options. What I find most valuable is the sense of humor and the effect it has had on me - that alone has reduced my pain level a couple of notches at least! :-) Apart from relaxing and distracting I also think it is really important to live for what one finds meaningful - even if in a restricted way. Take care and see you again!

  • Hi barbsch54.

    Thanks for your reply and help my sense of humour is quite good towards it with friends ect when I have a funny moment and forget things,sometimes it just gets hold of me and I feel helpless when I feel so normal effects my fitness training aswel but I'm now starting to let my body tell me to rest more and enjoy my time with my little girl just feel Iv still got a long wAy to go. But thanks for your help

  • Hi Tommc, Glad you are reaching out. :) The pain and fatigue of FM can become very overwhelming, as you know.

    I have been getting a lot out of reading the Fibroaction Fibromyalgia A-Z guide. It's posted in the "Pinned posts" section, which is in the upper right hand area of the front page of this forum.

    Continue reaching out - asking questions, asking for support, joining in on any post. :)

    Over time, we each learn how to pace ourselves and how to minimize pain, when possible. Finding balance can be a "moving target," and we constantly reassess/readjust. Hope to see you around the forum. :) KT_Rose

  • Welcome to the forum and I sincerely hope that you find the forum useful, informative and loads of fun. I have pasted you a link to our mother site below, FibroAction which hosts loads of useful Fibro information:

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

    All my hopes and dreams for you


  • Hi, I came across Fibro a few days ago in a leaflet from the pain management team I have started seeing.

    I feel a great weight has been lifted from me I thought I was going mad and have cried loads in the last few days , I've had pain for years and 14 months ago had to close my building business and go on the sick. Its been a hard year with doctors and counselling for depression the pain has been bad, all down my left side and several spots on my right, fibro fog and stomach probs.

    I now see some light at the end of the tunnel and I can put a name to it , I expect it will not be easy but nothing could be worse than what I've been through. I am already on 75mg amitriptyline and take solpadol as needed and knowing I am not alone is wonderfull.

    Good luck in your fight , I feel like I've just got up from being knocked down and am now armed with all the things I need to win.

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