Fybromyalgia - struggling!!!! - Fibromyalgia Acti...

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Fybromyalgia - struggling!!!!

Chlobo profile image
5 Replies

Like many on here, i am new to this.

i got diagnosed about 6 months ago with fybro plus a rare genetic disorder. My genetics specialist and neurologist are busy arguing over who 'owns' which of my symptoms meanwhile i am in pain on a daily basis and so very very tired!!! i am on Gabapentin and Amitriptyline and as much ibuprofen as i need but still the shooting pains continue. i can almost cope with the pain and discomfort but am struggling with the tiredness. I work full time and although work are really good, you can see they don't really understand. Does anyone have any miracle tablet they are on to stop the fatigue? If i didn't have to get my little girl to school, i am pretty sure i would stay in bed most mornings!!! Even walking is hard work.

Thank you in advance

P x

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Chlobo profile image
Chlobo
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5 Replies
Royalspec01 profile image
Royalspec01

Hi there Chlobo Really sorry to hear of your despair. Have they sent you to a fibro management course yet this is really helpful as fibro pretty much dominates most of our illnesses as its stress related. Unfortunately The tiredness is much pain related and fibro as this is so much part of our day and takes some getting used too. If we manage our fibro then it helps as for meds

well this is a trial and error thing and for the fibro side of life sounds like gabapentin is pretty much it. There are some other meds but that's where the trial and error thing comes in it may take time for your specialists to find the one that suits you. This illness takes some getting to know and it will take some time. I would suggest that you ask your doctor about the fibro management course this helped me understand it so much more. Im not a doc so cant really advise you on meds . If you read the comments made by others you may get a better view of things too. ITs taken me 2 years to come to terms with how to manage it. There's one thing I do know and that if id realise how serious it can get id have managed my stress a whole lot better to begin with and maybe id have been still working today but I didn't and it just got worse and gave me more symptoms. Tiredness fog. Although I do have a painful lower lumber and feet that aggravate it so maybe not. Well before i wobble on about it, take good care be gentle with yourself and lots of fluffies to you. xx

Chlobo profile image
Chlobo in reply to Royalspec01

Thank you for taking the time to respond. I knew today was doomed, i think i have annoyed my boss as as quickly as i walked into work, i turned round and said i have made mistake, need to go home. My friends at work always ask me why i go to work everyday even when i am feeling rubbish and i always reply it is because i never know how bad i am going to get. well today was the worst i have ever felt. I don't want to stop working full time but am struggling. If i could just beat the tiredness i think i would be ok. Although i only got diagnosed 6 months ago, i know i have had it longer. I have tried several different tablets but nothing is perfect. Everytime i increase some, it takes me days to get used to the new dose - don't mean to sound defeatist but it is bloody hard going sometimes!!!

TheAuthor profile image
TheAuthor

Hi Chlobo

I am so sorry to read that you are struggling in this way and I genuinely wish there was a magic pill to put everything right! There is a medication that you could discuss with your GP called 'Amantadine' which is specially devised to stop fatigue, my wife is prescribed this as she suffers fatigue with her MS. It is just a question of what your GP or Specialist say? Or if they feel they could prescribe it for you?

I want to wish you all the best of luck.

Ken x

Chlobo profile image
Chlobo in reply to TheAuthor

Thank you Ken,

I am going back to the dr's today so will mention it to him and see what he says. I appreciate there is no miracle cure as it is becoming more and more apparent that everyone has very different types and levels of pains and most people have something along side Fibro so it is hard to work out which tablets work!!!

mitziblue profile image
mitziblue

Sorry sweetheart but it's here to stay and the symptoms and pain only worsen over time. If it gets to be unbearable go to a pain clinic. They'll be able to help make your life and pain bearable. Hope this helps. xxx Mitzi

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