FIBROMYALGIA

Posted , 19 users are following.

HI ALL

I am Wardene and have had this condition for about 10 to 11 years and I find it hard to cope with sometimes, feel sorry for my hubby, he comes off the worse on bad days, just lately have had about 3 good days since xmas, now have bother eating and being sick after. In a wheelchair because have bother walking, which I don,t like and can,t get use to, use to work full time. I get the all the other problems like not sleeping, headaches, etc.

I just want someone to talk to who is feeling the same way. Sorry for moaning. I try to keep positive each day but its hard. I know what others are going through but people look at you and think you okay.

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  • Posted

    HI Wardene

    i have fm and i know it is very painful to have,have you got any painkillers for it,are you under the dr to give you help,

    i hope i can try and help you as i do understand it,you csn email me if you like gayle56

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  • Posted

    Hi Wardene

    Sorry to hear you too have this awful illness.

    I have had it for over 30 years now and still have days where i am not able to move etc. I also have M.E too. You are not moaning either. Your ill. I now am able to manage it the best i can. You must keep moving and i mean that even if its 5 or 6 steps around the room every hour. You say your in a wheelchair too. Aren't you able to walk at all? Sorry to ask but i use a wheelchair outside the house on very bad days when i am able to get out the house.

    I know how hard it is to keep positive too as FM makes you feel so sad, depressed and down alot. This time of year is always worse too with me.

    I have lost most of my friends as they just could'nt believe how ill i could be but thats their loss now not mine.

    Keep in touch when you can as i shall pop on here later on. Just found this forum today.

    Jules

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  • Posted

    hi,

    i have just been diagnosed with fms, i notice that some of you have had this condition long term, have u any recommendations to help with it.

    i have been suffering with fms for 6mths but was only diagnosed 2 wks ago, dr didnt help much any info would bee very much appreciated.

    i really need to talk to someone who understands what its like to have fms as my family and friends dont really understand.

    thanks.

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  • Posted

    hi sorry you have fm, you need to find a understanding dr to help you cope with it,he or she can start you of with gaberpentin to help your pain, andmaybe some sleeper,i can understand what your going thow,

    i will try and help you as much as i can,

    gayle

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  • Posted

    i need al the help i cn get.

    just checked out gaberpentin dr put me on pregablin which seems to be pretty similiar.

    i can barely walk, concentrate, move, and constantly ache, i try to drive occassionally on good days, but im lucky to get out for 5 mins.

    will it really be like this forever, im only 21.

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  • Posted

    p.s

    sorry if sound moany bout it, just find it hard to imagine, esp when no1 in my homelife seems to understand what im going thro.

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  • Posted

    Keep moaning to me, I dont mind, because I moan lots too, and my beloved Husband suffers it. He is my main carer, looks after our kids and main carer to his Dad also. He does most of the house work but draws the line at cooking - fair enough...my daughter (19yrs) does that. My Husband is a wonderful person, my Hero, but he too gets tired. My insurance dont want to pay up even though Ive not been fit to work for 10 years, let alone attempt the same type of job before all this errupted due to a road traffic accident. I have also been unsucessful with dla. The doctor says its all in my head, and another said that i'm not cognitively impaired so can do some kind of work, but as my daughter stated, but you are physically impaired, and all the meds clog up your head.....yep! she is correct.

    We dont have bandages, broken limbs nor any outward signs, except for the glume we carry around on our face to show what we are feeling. Isolation, frustration and depression hits hard. Sitting alone all day, unable to do much, then watching Hubby doing stuff that I should be doing. Amtrip makes me sleepy, drowsy and foggy, so i am thinking of coming off them. Some days I cannot get out of bed, let alone hold down a job, yet Incap is changing and I might be told that this my only benefit might be taken if I am considered able to work. If my GP dont understand, how is a member of staff at the DWP be able to assess my condition. This isnt living, its existing! Hows that for moaning. Thank you for listening, as it gives my Hubby's ears a rest. God Bless.

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  • Posted

    i know how u feel my hubby and my mother have to care for me full time, i cant be left on my own incase i have a fall, cant use cook incase i fall asleep etc.

    with regards benefits i am not entitled to any because my hubby works over 24 hours a wk (how else are we expected to pay bills and put food on the table etc)

    i never have good days, i have bad days and really bad days.

    i really worry about my marriage ive only been married a year in march and i feel like a burden to my husband already.

    people just cant understand that just because a ddisability cant be physivally be noticed it doesnt mean its not there.

    sorry rant over, im just glad that there are people here who actually understand what its like in everyday life. xx

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  • Posted

    Hang in there. It would do your hubby good to maybe, go along to a fibro-support group, because listening to others describe what you say day in, day out, will enable him to understand better, and hearing stuff from anyone other than us makes them take it in.. my daughter decided to do her thesis on fibromyalgia, and to gather information she prepared questions for 3 different support groups around midlands. I only managed to attend one, but Hubby took her to the other 2. He admitted that it was an eye opener for him (its not just me drooning on and on like an ole record). He said It was very frustrating for him to listen about the lack of support from DWP and even the medical profession. Some of the fibro-groups have been trying, for a number of years, to bring this condition to the attention of the European community. Try to keep busy as best as you can, whether it is reading or maybe having a go at cross-stitich, having said that, there are some days when I cant even lift a needle, let along lift a book and comprehend what Iam reading. Im dabbling a little with card making. Im glad I found this forum, I can pour my heart out, and moan to my hearts content while Hubby and Lads are happy watching the footie lol. And if no one wants to read it, then thats fine, but its off my chest! and non of my family have suffered earache for today. Tomorrow is aother day. So if it helps, type till your fingers drop off, everything else hurts anyway lol, pour out your feelings and anger and enjoy the moaning, then try to have a good restful sleep. God Bless.
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  • Posted

    Hi justweemee

    Saw you message and wanted to give you some advice. I have had fibro for about ten years or more. Only been diagnosed for four of those. The usual backwards and forwards to the doctor with different things going on. Sorry to hear you are not doing to well and only 21. Must be really hard for you. I have three pieces of advice for you. First it is good to try and do some exercise to keep moving. Even if it is only five steps a day and build it up on a daily basis. I know if is difficult when you have pain but it is worth it in the long run to keep moving and not stiffen up. Also the endorphins make you feel better and have a natural pain relief.

    My second one is to write down how you are feeling on a daily basis in a diary. Put down how your pain is, what meds you are taking, how you sleeping and any positive things you have achieved. I do this and it is very helpful to look back on and helps get it out of your system. If you can't manage to write you can always type it out if you have a computer. Thirdly look for another dr if the one you have isn't being supportive and understanding. I also did this and was lucky to find a dr who listens to what I have to say. He will also let me decide on some tablets that I would like to try. I was on 10mg of Amtripyline to help with my sleep and wasn't working very well. Was told I could gradually go up to 50mg but once on that was feeling sick, faint and unwell. I decided I didn't want to be on it any more and with the support of my doctor have now come off it. I feel a lot better and my sleep pattern is returning. Somtimes we take to many meds and the combination of side effects is sometimes worse than the condition itself. It is very hard to know then what is a side effect and what is to do with Fibro. How much do you take! Only come off the amitripyline on the advice of your doctor as can be very dangerous if not.

    I hope this has helped in some way and if you want any more help just reply back to me.

    Tess

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  • Posted

    Hello again.

    I agree with what Tess said. I too have changed my dr who told me my pains were my imagination, and sent me for counselling. well, that was the best thing he did for me because counsellor told be to change dr which i did, and new dr started from scratch,referred me to specialists in the fibro field. Amtr. is helpful but does have side effects so speak to your dr. if you are not happy with your dr seek one who will be understanding of your condition. yes, you are young, but keep exercising is a benefit, however little, but dont over do things either. my dreaded word is "pace". I get told at every appointment I go to, physio, gp, specialist, to always pace myself = slow but sure progress. writing things down is a very good idea too, 1) it might give you idea of when or what is causing flare-ups, and allow you to avoid. 2) getting it out of your head, clears your head. 3) when you look back, you might surprise yourself how well you are actually doing. Try to keep smiling and be positive, you have your whole life ahead of you so make the the most of it. Dont let this horrible condition get the better of you (easier said than done, at times), but find ways to live with it, listen to your body, when its telling you its tired, then rest, when you are having a good day, enjoy but dont over do it. Hang in there. God Bless Sandra

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  • Posted

    hi all,

    do any of u find that u r also losing alot of weight due to this condition.

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    • Posted

      Hi. I loose weight all the time. I've never been big but some months I loose all structure in my face. I am not able to gain any weight I just bob from one weight to the other. I don't have any ibs problems thankfully. I do however randomly bruise. A bruise appeared on my knee about an hour ago and has doubled in size and colour. 
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  • Posted

    Hi justweemee

    I haven't really noticed losing a lot of weight. The only thing I can think of is if you have irritable bowel. As irritable bowel is a condition of fibro. If you are losing a lot of weight with any other symptoms I would chat to your doctor. I don't know about anyone else with fibro. Take care. Tess x x

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  • Posted

    Hey Tess,

    Just checked out ibs, dont really have any of the symtoms. I have lost alot of weight dropped from size 20 to size 6 in 8mnths. i was told i was clinicly obese and now people call me anorexic, but i havent changed my lifestyle in any way (eating or exercise). just dont get it. Dr wont investigate says its irrelevant. STRANGE!!!

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