the pain is driving me nuts

hi everyone i am in such pain my skin hurts and its painful to sit even i have been diagnosed for 2 years but this is the first time i have experienced pain like this as i said in my last post i was unconvinced about diagnosis well over the last 2 days my pain levels have taken a nose dive and i am now experiencing some of the horrible symptoms you all post about i guess up to this point my pain has been well controlled but it seems now the pain killers are just not doing much at all. am already depressed and im sure this will not help i have a very stressful job due to the owners not the nature of the job and it seems to be sending me into the worst flare i have ever experienced and im not sure what to do with myself

Thanks for listening gentle hugs for all xx

26 Replies

  • Hi Honey

    It is horrid isn't it ? it sounds like you are in full flare which hopefully will start to settle down asap.Have you been back to GP for meds review ?

    I don't know how you manage to work full time whilst so ill, if you don't want to go on sick leave have you any holiday you could take so you can rest as much as possible

    I think you are probably right about the depression not helping, it just seems to be a vicious circle with one feeding the other

    I hope you have managed to get some good sleep and are able to cope today

    warm healing hugs x

  • I think many of our friends on here are experiencing a flare up. My skin is so sore even the shower hurts. Got an appointment at my pain clinic on the 28th but feel so poorly Im going to ring the docs when it opens at 8.30am....What meds are you on at the minute...and have you been seen by a pain specialist? If not I would recommend you ask your GP for an urgent referral x

  • yes i was seen by pain specialist who who decided that an online pain management course was best for me however it didnt help at all

    i am on Tramadol , pregablin, naprosyn, fluoxetine, amytriptolene, and thyroxine xx

  • I am on the same apart from the amytripillin...they changed mine to nortryptillin...similar thing but I was pilling on the weight and they said the amitrypillin wouldnt help. Bet youre like me and are willing to take anything just for some relief. My GP said just to add Diazapam this week and hope they helped! Think Gps tend to refer everything back to the pain clinic...dont blame them really x

  • Know how you all feel. It hurts me to breathe today and i have to get the littlies to school yet! all you can do is try to relax. Fibro feeds off stress and anxiety - it will hurt more if you get stressed. I know its difficult, my meds don't work - they will take the edge off but Im 42 and living in constant pain. Its depressing, but you get into a vicious circle. Try and relax and know that there are people who understand. Gentle hugs to you all.

  • i am also 42 i was never able to have children and now when i look at my life i think that was possibly a blessing although at the time i was devastated x

  • I love my littlies to bits, but each time i had one of them my condition got worse. I was outbound when carrying my little girl as i had SPD - it was awful. My new partner is refusing to let me have anymore (being an old friend he saw how i suffered) not that i would at 42 but it would be nice for us to have a child together but he looks at mine as "ours" he has known them all their lives as he is their Godfather. But, they both have hypermobility which is how i started - but at least i can teach them how to take care of their joints. It took them 35 years to diagnose me! X

  • My grandson has hypermobility. I would be interested to know how to help him if you can spare the time and energy?

  • Hi Honey, I get the sore skin feeling on my legs, have done for years, even before I was told I have fibro. Usually get it when I have over done things, which to be honest doesn't take much with fibro. I was working full time & ending up leaving my job as it was just too much sitting at my desk all day. My manager was horrid to me & i was on the verge of cracking up, it certainly didnt help my symptons, at the time i didnt know i have fibro. I now run own cake business from home, I can rest when I need to & it's helped a lot! I think the winter weather makes our aches & pains so much worse, certainly does for me. I got married in St Lucia 2 years ago & the hot weather took ALL my aches & pains away, I couldn't believe it, our aim is to leave this country in this future for the sake of my health! Living with fibro is so hard & such a struggle each day, mentally I have good & bad days & try & smile:0).

    Take care

    Debs xx

  • i got married in 2011 in Kenya and we too have decided to vacate the wet and dreary country for warmer shores we have chosen to go is very near gibralter as they dont get more than 60 days rain a year and temp never gets below 15 degrees good luck with your plans .hope it all works out xx

  • Hi I to an having the worst flare up ever. I have been back to work , this last month as have been off due to loosing my darling husbsnd aged 51 very suddenly .

    I have had constant pain it's really there all the time but the last week it has hit a high , the worst. So I totally sympathise with u . Hope it settles soon I find nothing really helps and am on a lot if medication . I was diognoised in August sftr have every test under the su for two years . X x

  • I don't know what to say except the old 'I'm sorry for your loss' but that sounds trite. No wonder you are in a flare, life is harsh but you have an extra blow to cope with. Please get some help with your grief as it may also help your flare. Hydro therapy may help you as might meditation. All the best, good luck.

  • Hi there so sorry you are in a flare .I have had fibro since i was 12 now 61 and it does not get any better .What i do is when it feels like im going into a flare i start the extra pain relief every four hours for several days .If its hurting in my bottom hips or legs i dont sit i lie with a waterbottle against my back and wait for it to stop .I dont know how any of you work ,but then i did with CF and chronic pain untill about ten years ago untill it got too much .Keep your chin up and know that it will pass and try not to get tense as this only adds to the pain .much love sweetie you can get trough it i know you can x

  • Hi everyone..Iv been off work for about 10 weeks now.just going to see the nurse at work..explain everything to her..:-(...xx

  • Hello Honey, I am so sorry to hear you are in such pain. Have you spoken to your GP about this to see if your meds need reviewing. You might not be getting sufficient pain relief or help with your other symptoms. It might be worth having a chat about this as soon as you feel up to it.

    Here is some info on flare-ups, I hope you find this helpful -


    I hope your flare eases soon and that you feel better before too long, take care.

    (((hug))) xxx


  • Hi all, I too suffer from very tender skin, i cant bear my clothes some days, as for sleeping it just doesn't happen, I'm either itching all over or cant stand the bed covers, then there's the over heating. and to add to all that i have the pain.

    I stopped taking any medication nearly a year ago, i drink colloidal silver and vit c and d .,i swim most days and indulge myself in the spa as often as poss. before i stopped taking the meds, i was on pregabalin at the rate of 27 a day, they didn't even ease the pain.

    now if I'm really bad i take 2 paracetamol and maybe a glass of wine, but that's it.

    there isn't a cure for FM we just have to learn to live with it, the sleepless nights are the worst for me, i go on auto pilot after a bad night.

    i hope and pray that one day soon someone will find a cure . God bless you all x Dot

  • gp has said that max dose for pregablin is 600mg and told me off for taking double that you must have been a zombie. x

  • no i wasnt, thats just it, they didnt touch me. my gp told me i could take up to 9, 3 times a day which i ended up taking, but they didnt have any effect so i gradually weaned myself off them.

    i hope you soon feel better, it isnt very nice been in pain 24/7 is it?

    hugs x Dot

  • no its not ,shame someone at ATOS doesnt realise how bad things get maybe they would have a little sympathy then and go a little easier on people who would rather work but are unable x

  • I dunno if its the time of year or what, but I too feel as though pain levels are going through the roof, if my OH rest his hand on my skin it burns I'm so sore to touch and hurt all over ARGHHH!!!!!!!!!!!! Please let me have some life back

    Susan X

  • I feeling worse i've felt in 5years with pain all my ears,got a cough and cold,diarrhaea,being sick,keep sweating so bad but ice cold then i red hot .neck and ears.burning.all joints feel like they've got poison in them and my ears.hurts to breathe.keep gettin bad pains in my chest over past few days.woke up last thursday feeling dizzy&weak.eyes doc said it a virus but i think it's a flare up but feel like no good saying to doc cuz seems like they don't care at all.they just told me to keep my fluids up and take i am already on morphine,gabapentin&paracetamal pain ther nothin else they can give me.i taking cold&flu tablets.i wake up every hour to go toilet cuz i drinking so much water to stop's hurting just to lie on bed.everytime i move it kills.starting to get bad stomachs now.if it doesnt stop soon i don't know how i going to copr.i feel so dirty.not eating much cuz it hurts and makes me feel suck.just don't know what to'my nieces 18th birthday party on friday,i just hope i be ok for that.i off sick from work cuz of it.anyone know how long a flare up can last?suppose it varires from person to doc only gave me a telephon consultation,i didnt even get examined.doc just said could last from7days to a month.i hope you are all ok.this first time i have posted anything.from kezzamadhead 23.gentlest

  • Hello there, I am so sorry to hear you feel so poorly. If you feel really poorly as if you can't cope with your symptoms then please try to get a home visit, it sounds like you have more than enough to contend with without feeling this poorly on top. I personally would telephone your surgery and tell them you can't make it to the surgery and that you need a Doctor to come out to you.

    If it is a flare-up of your Fibro, we can't guarantee how long this can last, it is so variable from one person to the next. It can be for a day or two, or it can last for much longer. Here is some info on flares which hopefully you will find helpful -


    I hope you manage to get some relief and some rest soon. Please let us know how you get on. Take care,

    (((hug))) xxx


  • Thx liberty :) hugs to you xxx

  • Hi, there this is the first time ive posted,but pain is an every day thing. I have never had a pain free day in 7 years, skin is so painfull just to touch,and no-one seems to understand as to look at us we look fine. I also have neuropathy in my feet and legs and a bulging disc, it is worse at night trying to sleep even the bedcovers hurt.I have been prescribed GABAPENTIN for pain in my feet and legs and this knocks me out but makes me drousy most of the next day.I am just glad to get a few hours sleep. I know stress makes the pain even worse, but I am so stressed just now trying to fill in the dreaded ESA50 form. It has taken me 3 weeks to complete it, I will be posting it on Monday, will post and let you all know how I get on.Honey25 I hope you get a bit of relief soon.

  • good luck with ESA x

  • I had worked full time since the age of 15 until 7 years ago when I was 48, and had to go to company dr who said I was unfit to work, I would love to be working and earning a wage. rather than living on benefits. With what Ive read ATOS either dont care or dont realise how debilitating this illness is. Going to bed now to try and get some sleep. nn everyone.

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