1. Community
  2. Bones, joints and muscles
  3. Fibromyalgia Syndrome

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

Next
  • grahammolyneux
    grahammolyneux Holly62324

    Posted

    As far as the feet go I know exactly what you are going through, I can get into a shower which feels cold on my body but burns my feet to the point that it is almost impossible for me to stay in there.

    I am waiting to go on the pain management course at Walton Centre in Liverpool, I have a couple of friends who have been on it and say that it is definitely worth going on but I like you have the same doubt as I to have been like this for over a  year  now. 

    I am trying to get into a hydrotherapy pool which I am told is a great help. 

    Best of luck for the new year and keep looking here and asking questions as everyone here knows how you feel as we are all in a similar position.  xx

    • Holly62324
      Holly62324 grahammolyneux

      Posted

      Thank you so much for your input, it actually means a lot. and I am sorry to hear how much it effects you. I am too wanting to go to a hydrotherapy pool as I have read they are very good for this condition.

      My Doctor said that he feels pain management would be of little use for me, and when I asked about a local hydrotherapy pool seemed unsure, and told me there used to be one local but had shut and he believes the nearest is ashford (far away) but he'll look in to it and that I should ring next week to find out about it.

      It's such a shame that there are conditions like this where there is near no type of treatment, I mean for me it looks like my last option is the hydrotherapy, and if not? I don't know.

      Thank you again,

      Holly x

    • grahammolyneux
      grahammolyneux Holly62324

      Posted

      I tried acupuncture last January but it didn't help me at that time but I will be trying it again.

      If there is a health farm they would possibly have  hydrotherapy pool.

      Best of luck 

    • Holly62324
      Holly62324 grahammolyneux

      Posted

      Sadly with Acupuncture it was only a temporary fix for me, which only lasted a very short while, and I would have to go daily to actually be of great benefit. Everybodies different I guess, and hopefully you'll have more luck with it.

      Thanks,

      Holly. x

  • christine26761
    christine26761 Holly62324

    Posted

    Hiya Holly, poor you, I have had Fibro now for about 17 years and was diagnosed with Sjorens  Syndrome first would you believe...firstly once your meds are sorted you WILLfeel better, I found this an issue also...extremes in being hit and cold are just part and Rachel if Fibro..you will learn how to cope with that-my feet always feel cold..when inside my house or anyone's fir that matter I always have hot water bottles close by..good for all areas...a pain clinic dies wonders for you..please go....hydrotherapy is just excellent, you can do it in any local pool..you don't need to have a special hydrotherapy pool near you...I have a sauna with infrared at home..it's just fantastic for this inner pain..hooe and oray all gets sorted out fir you real soon, unfortunately it takes a bit of trial and error at first, but you will get sorted we all do in some way...be blessed..:-) xxx

    keeo researching I did...it really helps...

    • Holly62324
      Holly62324 christine26761

      Posted

      Hello Christine,

      With the Fibro, have you found any particular meds I haven't listed which were of a benefit to you? Or is there any other things that you do. In regards to the hydrotherapy I am researching where to go, and when the weather isn't as cold will be doing swimming etc..

      Sadly with the winter I feel my joints are alot stiffer and my bones click contantly. I am appplying a special gel to my knees often as they have gotten bad. You wouldn't believe I am 20 if you lived with me. And the problem is with Fibro, you look healthy on the outside, but on the inside I feel like I am dying. It's horrible.

      And how did you manage to be diagnosed? And were you given a treatment plan? Sorry for all the questions.

      Thanks again,

      Holly. x

    • christine26761
      christine26761 Holly62324

      Posted

      Hiya Holly, the only meds that help me is amytriptiline,I also take panadol Osteo 3 x day..I take the amytriptiline at 8.30pm by the time I'm ready to hop in bed I'm ready for sleep..It gives me a good nights sleep- which is imperative for you with dealing any pain the next day..at least  it's manageable..I also take vit D very important, I also take Q10-Geonzyme..boost energy levels...good for heart support too- that's just a bonus I guess. It takes a while to work out what suits you the best,,but I couldn't function daily without the amytriptiline,p-the only prescription med..hope all gies well fir you..:-) xx
    • Holly62324
      Holly62324 christine26761

      Posted

      Hello Christine, I see, what is Panadol Osteo? I like in the UK, is that something that I can be prescribed. And how did you manage to get prescribed amitryiptiline? As when I asked about it I was told that it would be better to put me on nortriptyline which is in the same family but apparently better lol.

      Anyway, I hope your doing mell!

      Thanks,

      Holly. x

    • christine26761
      christine26761 Holly62324

      Posted

      Hiya Holly, Panadol Osteo is over the counter med and very cheap..it's 600 grams of Panadol that's all, I take 2 every 6 hours, I work it out so that my last ones are with my night med....the Amityptiline is prescribed...the hospital ended up putting me on that in the early stages of diagnoses -it is an old drug apparantly - it was used for depression once but they found out that it numbs/or cuts off the pain at the nerve endings stopping the pain from travelling to the next nerve.(suppose that's  what worked for it being an anti-depressant)..you do need to get on the right does though, it took me a little while to get the right dose for me....other too.....I only take it at bedtime...it's great..as are hot water bottles in the day and any type of hydrotherapy-any swimming pool, just walking up and down it really really helps..stay strong..and ask..even if you have to demand your doctor to try something else that works...it's your body and you pain...your in charge of you.....,be blessed,,,:-) Australia..
    • christine26761
      christine26761 Holly62324

      Posted

      Oooops I forgot Panadol Osteo is just 600 grms of  paracetamol. I'm. In Australia and it's often just called Panadol but it is paracetamol..:-) xx
  • Sandra1701
    Sandra1701 Holly62324

    Posted

    I am really sorry to tell you but i have been through the exact same. Just passed from one doc to another with no real answers. I had to come off all pain killers as i had become allergic to them. I can't take anything with morphine in it cause it drives my skin mad with itch. I am now only on paracetamol wich doesn't really help. The best thing for pain i have found is accupuncture which made me pain free for 3-4 months. It was like heaven. Only problem is you have to wait 6 months in between each session. I have even tried injections and had to pay for them but they seem to have made me worse. I am now back on the waiting list for accupuncture.

    Have you tried this yet?

    Sandra

    • Holly62324
      Holly62324 Sandra1701

      Posted

      Hello,

      It's realy awful, having no hope or breakthrough when it comes to treatment.

      I take so many meds for the pain. The trouble is, I was looking into Hydrotherapy, and when speaking to the GP found out that there are no local ones on the nhs, and the ones that I can pay for are only on a Monday and on a Friday. Between 08.00 and  11.00 am.

      Work stops me from doing a lot of things, and it's not something I can exactly explain to my boss being that this is a new job.

      On the bright side I have spoken to my GP and he has agreed to refer me to the Pain Clinic.

      And I have tried accupuncture which I found as a temporary fix.

      Thanks,

      Holly.

    • christine26761
      christine26761 Holly62324

      Posted

      I go to the local swimming pool, I just do it myself..I was shown what to do in the hospital tank years ago, but just walking up and down is even great..it's the cost of  the pool entry that's all, Now I actually use the resort  near by.....it's great as when there's no school holidays I'm the only one in the pool...:-) xxx
  • Buzbi
    Buzbi Holly62324

    Posted

    Hi Holly,

    I currently feel the same i take Gabapentin 300mg 3 x daily so 900mg in total then Co-Codomol 30/500mg 2tabs 4 x daily and if its bad she takes me off the co codomol and gives me tramadol. They have just given me Mirtazapine 30mg 1 to be taken at bedtime because i broke down in front off her. I take all these and feel so drowsy at work. My Rhumes gp asked me if i felt the gabapentim was working and to be honest i cannot feel no difference so he told me to stop. I feel i have JHS instead of fibro but i doubt my gp will  listen 

    • Holly62324
      Holly62324 Buzbi

      Posted

      Ah bless you, I know the feeling. Most of the time when I speak with my GP I end up in tears, I am very emotional when it come's to the Fibro. and I'm so frightened that I end up in a wheel chair. 

      I can feel my joints getting stiffer, my body getting weaker. My fingers are now starting to hurt, I get shooting pains in my knees also. My back is so bad it's near unbearable. I mean my pain relief takes the edge off, and helps a lot, I mean if I didn't take it I'd certainly notice the difference. But even with the pain relief I am sometimesI in agony,

      I do find it scary, thinking of the future, I mean i want to learn to drive but with all the meds I take, plus I can't turn my neck properly as the pain is unreal. And I love going to theme parks, and usually go every year, but haven't been able to since I am so weak.

      Thank you for your help.

      Goodluck with everything, I hope this will be all sorted for you.

      Holly

    • grahammolyneux
      grahammolyneux Buzbi

      Posted

      I am on pregablin 300*2 per day having been Gabapentin previously and to be honest I haven't noticed any difference between them.

      But it's worth a try. I have been on amitriptalene but they wanted me to go to 150mg each night but when I got to 125mg  I was completely dried up so I have reduced it back down to 75mg but I still struggle to sleep. 

    • grahammolyneux
      grahammolyneux Holly62324

      Posted

      Holly, your not on your own when it comes to emotions. 

      yes here I am a male that is admitting to tears.

      I have ended up exploding at a male gp who frankly shouldn't be allowed to practice anymore. 

      I went to him in agony with my hands and feet in so much pain that I was struggling to get out of bed and to the point that I felt like my nails were being pulled out with pliers but all at the same time. 

      The pain clinic "I am told" is fantastic to help get your routines in order and how to pace the tasks to help you to get through the day.

      It's a shame about the hydrotherapy but maybe you will find a swimming pool close that has a warm pool available 

    • Holly62324
      Holly62324 grahammolyneux

      Posted

      Hello Graham,

      Thank you for your comment, and I am sorry to hear your going through all that. Fibro is a horrible condition, which is controlling our lives, and I am the type of person who likes to be organised and plan ahead, and I cannot do that anymore, I have to take life a day at a time.

      I wake up each morning in agony, struggling to move, and when walking to the bus stop feel like crying with the agony, the tablets don't kick i quick enough in the morning.

      And at night I am restless, and struggle to sleep, and when I do I am constantly tossing and turning. But during the day I am exhausted.It doesn't make sense.

      From everything I have read the pain clinic is meant to be good, which is why I have asked my GP to refer me. But hopefully I can get myself into a better routine.

      Thank you for your help,

      Holly.

    • Holly62324
      Holly62324 grahammolyneux

      Posted

      How did you get prescribed the Pregabalin, as when I asked my GP he said he isn't allowed to prescribe them and it has to be prescribed upon a speciallists request?

      Thanks,

      Holly.

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.