Fibromyalgia

longforthesun

I too have Fibromyalgia. Was diagnosed 3 years ago but have had it since my teens. I am at a SAHM with 2 kids. Thankfully I don't work. I only take pain killers if it gets really bad. The anti depressives made me to dizzy in the morning so gave them up. My GP is wonderfull. I was tested for everything before being referred to a specialist in Fibromyalgia who confirmed i had it. My GP always asks after me even if its one of the kids she is seeing. At present my symptoms have been mild and I am very grateful for this. I do tend to find having a very very hot bath will ease lots of my pains. I get awfull pain around my breast bone and in my arm pits and was delighted to read other folk get this too. That sounds awful but just knowing there are more people out there like me is comforting. I actually asked my GP if it was all in my head and was told NO this is real. Anyway not sure of the point of my ramblings but just wanted to say hello and thanks for this thread I shall be dropping in to get some support and tips from folk.

bigzippy

raeh wrote: »

hello all, im going to have to start coming in to read more often if you are all going to talk this much as im exhausted from reading :rotfl:

C'mon, you know there's nothing better going on in your life

I'm sure these sorts of forums are designed so we can comment on our lives rather than live through them! :rolleyes: :rotfl:

bigzippy

longforthesun wrote: »

I too have Fibromyalgia. Was diagnosed 3 years ago but have had it since my teens. I am at a SAHM with 2 kids. Thankfully I don't work. I only take pain killers if it gets really bad. The anti depressives made me to dizzy in the morning so gave them up. My GP is wonderfull. I was tested for everything before being referred to a specialist in Fibromyalgia who confirmed i had it. My GP always asks after me even if its one of the kids she is seeing. At present my symptoms have been mild and I am very grateful for this. I do tend to find having a very very hot bath will ease lots of my pains. I get awfull pain around my breast bone and in my arm pits and was delighted to read other folk get this too. That sounds awful but just knowing there are more people out there like me is comforting. I actually asked my GP if it was all in my head and was told NO this is real. Anyway not sure of the point of my ramblings but just wanted to say hello and thanks for this thread I shall be dropping in to get some support and tips from folk.

Welcome longforthesun :hello:
I know what you mean about the breast bone pain. I have a lump that goes up and down depending on what it feels like doing :rolleyes: I got really freaked about this a while ago and must've asked a good few nurses and doctors in turn. They told me that, essentially, it was my ribs rubbing up against the breastbone, causing scar tissue - which explains the lump. Apparently this gets better and worse depending on what it wants to do... so I have to leave it at that. Very random though!

The pain in the arm pits etc has gotten so bad that I can't deal with wearing bras (sorry fellas, you'll have to be subjected to such info ) anymore - esp the underwired ones, as they just rub/touch against the ridiculously enlarged lymphs too much. If anyone wants a handy alternative though I have to recommend the crop tops that you can get in a pack of 2 (1xwhite and 1xblack) for £4 in Tesco (they come in s/m/l I think). They're a life saver.

Unity

aliandy wrote: »

Unity, I think a lot of docs don't believe in the existence of FMS, one cardiac specialist said to my Mum, " oh it says here you have Fibromyalgia, I only thought that was for people with mental problems"!!! :mad: Lovely woman, I would have loved to have been there to ask exactly what she meant by that awful remark!

Your mum could always have slapped her and blamed it on the mental problems :rotfl:.

I remember a 'specialist' who wanted to perform a hysterectomy on what he said was my 'redundant organ' - I told him that unfortunately a lot of 'specialists' walk around with a redundant organ between their shoulders!

I still have my bits - thanks to a very good homoeopath - but of course that's all nonsense and doesn't work (according to said specialists :mad:) - which is why the royals all live to such a good age :rolleyes: (well that and the fact that they never have to wait in an NHS queue :rotfl:).

Unity

longforthesun wrote: »

I too have Fibromyalgia. Was diagnosed 3 years ago but have had it since my teens. I am at a SAHM with 2 kids. Thankfully I don't work. I only take pain killers if it gets really bad. The anti depressives made me to dizzy in the morning so gave them up. My GP is wonderfull. I was tested for everything before being referred to a specialist in Fibromyalgia who confirmed i had it. My GP always asks after me even if its one of the kids she is seeing. At present my symptoms have been mild and I am very grateful for this. I do tend to find having a very very hot bath will ease lots of my pains. I get awfull pain around my breast bone and in my arm pits and was delighted to read other folk get this too. That sounds awful but just knowing there are more people out there like me is comforting. I actually asked my GP if it was all in my head and was told NO this is real. Anyway not sure of the point of my ramblings but just wanted to say hello and thanks for this thread I shall be dropping in to get some support and tips from folk.

Hello Longforthesun :wave: (excellent username btw:T). I just wanted to say that a good GP is worth his/her weight in gold. I have one - but since he's from Germany I live in dread that he might get homesick .

I think things are getting a little better compared to what they were in the early 90's - but there's still that tendency by some docs to think we are all 'eggshell personalities' - when in fact if anything the reverse is true and easily demonstrated by a lot of the posts on here. We are if anything over-achievers who would rather die than admit defeat or ask for help. Is it any wonder we get ill? :rolleyes: My mother used to warn me against burning the candle at both ends - but these days I'm lucky if I can light the thing at all :huh:.

I'm off to do the tossing and turning thing loosley resembling sleep - so goodnight and sleep as well as you can .

bigzippy

I know this is off topic (although not for an MSE forum I guess ) but... as I've said I'm getting married next year. At present I rent a house privately, get housing benefit, council tax benefit, incapacity benefit and DLA. I've just done the "5 minute benefit check" thing as if we're already married and it's not (obviously anyway) telling me that we'll be entitled to housing&council tax benefits... which is incredibly disturbing! My OH doesn't earn much and still has to pay to upkeep his mother's house (long story) when we're married and I'm really freaking out that we won't be able to have a roof over our heads...!
Can anyone help me out here, before I have a mental/financial breakdown..??

bigzippy

Ok, so it's 4 in the morning, which actually isn't an unusual time for me to be (still) awake... but I currently want to systematically pull out every one of my fingernails and scratch the nerve endings underneath. Every muscle is in spasm, I have no grip or coordination and I feel like I'm enduring chinese water torture. This has GOT to stop! If only I could get to sleep and stop feeling it, but of course, I can't. I feel like everything's gone numb, but then been woken up, into that really annoying and painful pins and needles stage where you bang part of yourself and the nerve endings freak out.

Can't deal with this but there's nothing I can do about it....

raeh

bigzippy im so sorry you had such a bad night, i have nights where i feel like theres things crawling under my skin and pulling at all the nerves so i cant lay still but yet it hurts to move too! the nights seem so long then too dont they? i hope you managed to get some sleep xxx

do you think it was due to you being worried too?? im afraid i cant help with your benefits questions as we dont claim anything but do you think acually going into the office and explaining in person that your hubby to be has other commitments which mean you have far less income than it looks like would help? sorry i cant help but im sure there will be people on here that can x

i hope everyone has a good day, im off to work now and im so glad its friday and i can have a couple of days rest!

ps hello longforthesun and welcome

Unity

bigzippy wrote: »

I know this is off topic (although not for an MSE forum I guess ) but... as I've said I'm getting married next year. At present I rent a house privately, get housing benefit, council tax benefit, incapacity benefit and DLA. I've just done the "5 minute benefit check" thing as if we're already married and it's not (obviously anyway) telling me that we'll be entitled to housing&council tax benefits... which is incredibly disturbing! My OH doesn't earn much and still has to pay to upkeep his mother's house (long story) when we're married and I'm really freaking out that we won't be able to have a roof over our heads...!
Can anyone help me out here, before I have a mental/financial breakdown..??

Hi petal, I wish I could help, but my speciality begins and ends with DLA I'm afraid. I get SDA rather than Incapacity, it's less but not taxable and Industrial Injuries Benefit. DH gets the princely sum of just over £50 CA, but doesn't even qualify for free prescriptions! I don't understand the system at all. Last year we got Child Tax Credits for DS plus free prescriptions, dentistry and eye care. Now he's at uni we don't get the Tax credits any more, hence less income - but we no longer get the prescriptions, dentistry or eye care either - and believe me I have tried applying - twice since I thought I must have filled the form in wrong:o, but the same result. We would get some help - but would have to pay the initial £135 of dentist costs first. I'm at a complete loss on this one - but at least you know it is not just you . Thanks to this site we manage - although it was difficult at first when DH had to become my carer and many thousands of pounds income disappeared in a puff of smoke :eek:. We soon learnt that there are more important things in life however .

bigzippy wrote: »

Ok, so it's 4 in the morning, which actually isn't an unusual time for me to be (still) awake... but I currently want to systematically pull out every one of my fingernails and scratch the nerve endings underneath. Every muscle is in spasm, I have no grip or coordination and I feel like I'm enduring chinese water torture. This has GOT to stop! If only I could get to sleep and stop feeling it, but of course, I can't. I feel like everything's gone numb, but then been woken up, into that really annoying and painful pins and needles stage where you bang part of yourself and the nerve endings freak out.

Can't deal with this but there's nothing I can do about it....

I can't remember, but is it you who takes Baclofen? I have the 10mg tablets and my doc has said that I can take up to five of these to relax the muscles when I get those bloody awful sensations:eek:. Diazepam is also a good muscle relaxant - but I am very wary of it myself as it's addictive and I find a very de-motivating drug.

If you are like me, you can cope with the pain - after a fashion :rolleyes:, but the nerve symptoms - from twitching to spasming and every itchy, burning, prickling, tingling sensation in between drives you to distraction _pale_.

I hope you feel better now it is light :hello:.

ailz95

I remember....

I was sent to physio for a neck problem and the therapist said that while it would probably respond to massage the fact that I had fibro meant that I should never have any type of massage done, as it can cause more harm than good.

Bigzippy, speak to the DSS and explain the problem - they will explain the best way to sort the problem out - they aren't allowed to tell you without you asking, but I've found them to be very helpful.

I'm feeling okay(ish) today. My problems were put into perspective yesterday. I went round to see my next door neighbour whose 7 week old baby has SMA (Spinal Muscular Atrophy) and he is very close to death - she thought she would have another few months with him, but it is moving so fast - it's like Motor Neurones' for babies. It's heartbreaking. I'm infertile - but this is much worse than that.

Today I am grateful for:

This forum - and the people on it
My hubby
The weather being reasonably warm and not wet (yet)
Good neighbours.

Hope your day is going okay.