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Fibromialgyia & It's effects, what now?

Posted , 8 users are following.

Holly62324
Holly62324

Hello,

I am new to this forum, I know of this website initially as my Dr advises it as a resource.

So I am 20 years old, and have had Fibro for over a year now. It seems I've been going round and round in circles. I've had 3 sessions of acupuncture, been referred twice to physiotherapy, done Pilates, been referred to the Clinical Assessment Service (CAS) and also to a Rheumatologist.

I've had an MRI and bloods done which were all basically clear, the MRI only showed some schmorl's nodes and an inflamed left disc which apparently has nothing to do with the pain I am experiencing, and I am on so many meds it's incredible I'm still walking.

I take Gabapentin 300mg three times daily. Gabapentin 100mg two, three times daily. Effectively 1500mg daily. Tramadol 50mg two every four hours, (usually eight daily). Notriptyline 10mg one at night and citalopram 50mg 1 a day. This is all in relation to the pain, and also the fact that the fibro is getting me so down.

Now what I would also like to add, and I apologise for such a long essay, but I really need some help, and/or advise. But I am also experiencing a high sensitivity to temperature, to which when I'm hot or it's hot I am sweating, and when it's cold I am freezing. Now most effected are my feet and toes, they are freezing no matter what I do, and are near impossible to warm up, to touch they are cold but otherwise they are beyond freezing, like ice cubes are between each toe. I've done some research and think I have Raynaud's Syndrome, but I'd like to know what I do next?

I have now been discharged from my Rheumatologist, and he advised the Dr to refer me for pain management, but I feel that is just a waste of time, although I am most of the time in some form of pain, stiffness, tiredness or ache's I feel this is going to be my life for now on. I would like to add that after doing hours of research I decided to try going wheat, gluten and dairy free which in my opinion has not helped. After seeing the rheumatologist he says he thinks it's Fibromyalgia that I have. Which is already what the GP thought. But still I have received no actual diagnosis.

Any help and opinions would be most appreciated.

Thanks,

Holly.

3 likes, 26 replies

26 Replies

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  • denise56617
    denise56617 Holly62324

    Posted

    Hi Holly,

    I am also only taking Amitryptiline at night to help with sleep and some of the pain. I also sometimes take paracetamol during the day but these only take the edge off the pain. Maybe you could ask your doctor to slowly reduce some of your medication as it doesn't sound as if it is working. I was on Amitryptiline for quite a few weeks before I felt any benefit but have been fortunate to not have the side effects some people have. I am not pain free and can only manage to work 13.5 hours per week (from 24) due to fatigue and pain but I am better than this time last year (before diagnosis).  My advice is to try anything that is offered to you to help you to help yourself- pain management, CBT, hydrotherapy, meditation, physio etc. They won't all work but eventually you will find something that helps. I am due to start hydrotherapy and intense physio in two weeks. I am not sure what to expect as I have to go every day (Monday to Friday) for two weeks. I have real problems with my hands and arms and this is causing difficulties at work as I cannot do as much keyboard work as I used to. I'm not sure what will happen at work if the hydrotherapy doesn't help but I'll cross that bridge when I get to it. Some private gyms have hydrotherapy pools - some Total Fitness centres have them but you have to pay for treatment - not sure if this would be an option for you.

    I also find Tai Chi helps as it is a very gentle form of exercise.

    From reading many posts on this site over the past few months it seems that medication alone is never the answer but it is a lot of trial and error to find out what else works for you.

    I hope you find something to help you as you are very young to have to cope with this.

    Take care and I hope this year is better for you.

    • Holly62324
      Holly62324 denise56617

      Posted

      Hello Denise,

      My sleeping pattern is very messed up, And my Dr doesn't seem to want to give me any tablets to help me sleep. He gave me a two week supply a while back, which helped me sleep like a log. But after asking for another he didn't want to.

      Luckily there are a lot of posts on here that I can take the time to read, and study the internet a lot to make sure I am not missing out on any up to date medications or opportunities to improve my quality of life.

      I just hope that a cure will be available for Fibro in my lifetime, although my thoughts are that I'll be too old to be able to make the most of having control of my body again, being able to get out of bed pain free, walk up and down stairs and be able to walk even so much as short distances without being in agony.

      Every movement I make my bones click.

      Good luck with everything.

      Kind regards,

      Holly.

       

  • anne90395
    anne90395 Holly62324

    Posted

    Hello Holly,

    There is lots of good advice on here already, and it seems that what works for one does not always suit another. It is all trial and error, and I am still on that journey, having been recently diagnosed.

    I think if the rheumo said he thinks you have Fibro then I should take that as a diagnosis!

    I am amazed at the amount of meds you are taking, and if you are still in pain, p'raps you could ask your Doc to help you get off some of them. Like a few who have already posted, I only take Amitriptylene, 50g about 5pm. Helps with sleep, not so much pain. I sometimes take Ibuprofen if I am having a difficult day. Doesn't hppen too often as I pace myself, take naps when I need to, work and looking after granchildren permitting! I am never free of pain, but it is usually bearable. Wish you luck in finding out what suits you.

    Take care, Anne

    • christine26761
      christine26761 anne90395

      Posted

      Same meds here.....but I take Osteo Pabadol 3 times a day.too, can't take ibruforen .but taking that  thAmitriptylene a couple of hours before bedtime. at 8.30 along with the 2.Osteo Panadol is amazing ...great sleep, soooo  helps you to cope with the next days pain better..it us just sooo copeable.  :-) Oz..
    • Holly62324
      Holly62324 anne90395

      Posted

      Hello Anne,

      I appreciate your input, I have noticed that a lot of people are on different meds, and different plans concerning their Fibro, I just wish that My GP took it more seriously, and treated this like a serious issue, as for me this is serious.

      I feel like my life has completely changed, and I am not the person I used to be, I just woke up one morning in agony, and rang NHS111. I couldn't get out of bed, I could hardly move, and I didn't understand what was going on.

      It's nice to have people on here who understand what I am experiencing. No body understands what I am going through. They just think things are ok, or that I am managing, but inside, I am depressed about this whole thing, which is why I am on the citalopram.

      Which is why this Fibro is a vicious cycle, I can't move/excersise much because of the pain, which makes me depressed, the stress/anxiety makes the Fibro worse or even flare up which makes me suffer even more.

      Thanks again,

      Holly

    • christine26761
      christine26761 Holly62324

      Posted

      That's where the Amityptiline would be good for you as it kills the pain and is a light anti depressant...look it up..get informed, then when you chat to your doc you know what's what and then you can ask him why he won't give you it...good look...a Holly.
  • sarahkoops
    sarahkoops Holly62324

    Posted

    I have the same exact thing, but the hot/cold thing is due to withdrawls from the medicines. Unless you take it at the exact same time every day and the same amounts your body freaks out, mine does the same thing but is always fixed by taking my medicines. Hope that helps!
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