Fibromyalgia

thecelt

Hey Everyone,

Hope everyone is feeling a bit better,

Not much changed from my side,

Today seems to be a day where i feel completely drained of any energy,
more so than usual!!

star-pants

Ditto thecelt - I'm back in full time work the past month and I'm just completely wiped most of the time. So annoying when you've lots to do

Resend

I wondered what you folks think of the Doctor Fredrick Wolfe who first defined fibro now saying he was wrong

He now considers the condition a physical response to stress depression, and economic and social anxiety.

I know someone who has pains a lot from knee down in legs/ankles/heels/instep and also fatigue but has not been diagnosed with fibro as doctor is sceptical and refers to Dr Wolfe and his reversal of opinion. He says that since there is no treatment a diagnosis of fibro is not much use

thecelt

starpants - hows the job going?

I seem to be a bit better,
for some reason sun and mon i was just drained,
forced myself to leave the house sunday cause option 2 was go back to bed,

I dont know if its a good or bad idea,
am thinking of buying a bike,
maybe try to get more active, see if it helps!

star-pants

It's going grand thanks thecelt - still knackered but it's nice to be working.
Picked myself up a kidney infection, and that caused very bad back pain which has now spread to my hip/knee because of how it was causing me to walk but hopefully it'll bugger off soon!

Glad you're feeling a bit better, bike might be good. I've no luck with bikes, my legs tend to seize up a little.

thecelt

Talked to my doctor this week,
am going to try weaning off the amitriptyline.
I think the side effects are too bad to keep taking them any longer!

i-digress

It's funny how people vary, I find amitryptiline great. If I could just get some decent pain meds that worked I'd be happy.

thecelt

i-digress, am glad its doing it for u.

Some people seem to do good on it from what i see and hear and some of us dont!

Even my wife has found that I am different and grumpy since I been on it!

Has anyone tried acupuncture?

i-digress

thecelt wrote: »

Has anyone tried acupuncture?

I'd be interested in knowing this too. I'm considering it as an option, I'm getting to desperation point with regards my mobility.

shelly_g

Hello all

I suffer with Chronic back pain and was on all the tablets metioned - I was allergic to amitryptiline and Lyrica was too hard to take for me so on my last appointment with consultant he suggested Acupuncture... I was so angry that that was it for me and presumed it would be a waste of time ..

I did 6 sessions of Acupuncture and physio sessions in a clinic in Ratoath (PM me if you would like a Link to his site or just google) and wow did it make a difference ...

i found the Acupuncture helped me to relax and in turn allowed for treatment to the area in my back that i wouldnt normally let anyone near .... i was in alot of pain for the first few visits but by week 5 i could see a major difference in pain levels and in my general mood ..

I havnt been for a few weeks now as I try to maintain it at home but will be going back soon to ensure things stay at the level they are at ..and i am off all pain meds thank god

Pain hasnt totally disappeared but is OK and Acupuncture did get me to a stage where I was up and about and active again and able to get into the car and drive in comfort ..

Hope you dont mind me posting I dont have Fibro but pain is pain and I have had 4 years of suffering so can understand how yee all feel

Hope this helps ..

star-pants

celt I can understand you being sick of side effects, the amitryptiline worked somewhat for me but I got that pox type rash. The prozac drove me batty & didn't really work. Lyrica just made me gain weight and didn't really work.

There's no point being on meds if the side effects outweigh the good effects, because it's just adding to your problem. Least that was my view on it.

Shelly it's good to hear acupuncture has worked for you, I guess people do have to consider all possibilities to see if they can get any sort of relief.

My doctor put me on Tylex this week, as well as uping my Lyrica. The tylex is really good. Contains Codeine, so thats probably why. Bit groggy from it, but Im sure Ill get used to it.Noticed I was slurring my words abit.But it really helps.

thecelt

anyone else heard that fibromyalgia can be confused with lyme disease?

Laurendonegal

Jake1 wrote: »

My doctor put me on Tylex this week, as well as uping my Lyrica. The tylex is really good. Contains Codeine, so thats probably why. Bit groggy from it, but Im sure Ill get used to it.Noticed I was slurring my words abit.But it really helps.

hi jake, i developed fibro when i was 16 my consultant put me on tylex whiched helped alot as i couldnt walk very far, im now 22 and my gp refuses to give me tylex unless im travelling somewhere far. I was on lyrica for a while didnt help atall i put on alot of weight and made me very moody. Tylex is the best pain med ive come across , good luck

Laurendonegal

Laurendonegal wrote: »

hi jake, i developed fibro when i was 16 my consultant put me on tylex whiched helped alot as i couldnt walk very far, im now 22 and my gp refuses to give me tylex unless im travelling somewhere far. I was on lyrica for a while didnt help atall i put on alot of weight and made me very moody. Tylex is the best pain med ive come across , good luck

Cheers for your good wishes Lauren :) yeah they are really good. Funny thing is when she said she was putting me on them I assumed for some odd reason they were like solpadeine, and I said to her nah, I couldnt be bothered, so glad I did now.

For the first time in months I have been getting some relief.

joolsveer

I was diagnosed with fibromyalgia in 1998. My mother has recently told me that I could not have it because it only affects women and I am male although my 18 year old daughter has doubts about my masculinity!

iptba

joolsveer wrote: »

I was diagnosed with fibromyalgia in 1998. My mother has recently told me that I could not have it because it only affects women and I am male although my 18 year old daughter has doubts about my masculinity!

Apart from obvious conditions that one gender can't get because of not having that part of the anatomy, or conditions relating to genes (which usually only affected men), most conditions affect both men and women, although there can be a predominace of one or another.

Blackrocks

Can anybody tell me if Fibro qualifies for Long Term Illness Benefit??
I worked all my life after educ., and cant do anything now with pain.
would truly appreciate a reply asap. Thanks.

femur61

joolsveer wrote: »

I was diagnosed with fibromyalgia in 1998. My mother has recently told me that I could not have it because it only affects women and I am male although my 18 year old daughter has doubts about my masculinity!

Rest assured completely wrong, my husband has it, and I work with people with chronic illnesses and lots of men get FM. There are plenty of websites on the net.

Resend

Jake1 wrote: »

Cheers for your good wishes Lauren :) yeah they are really good. Funny thing is when she said she was putting me on them I assumed for some odd reason they were like solpadeine, and I said to her nah, I couldnt be bothered, so glad I did now.

For the first time in months I have been getting some relief.

they are but have more codeine

Laney xox

Hi,
I suffer with Fibromyalgia, it is a very lonely chronic ilness that most people do not understand. Sufferers do not want sympathy, just understanding. If You would like to understand what a day in the life of a Fibro sufferer is like, (or any one else that suffers with chronic pain or a similar illness) then please read The Spoon Theory, written by Christine Miserandino. This short story is also an excellent way for a person with a chronic illness like Fibromyalgia to explain to family and friends how they feel. http://www.butyoudontlooksick.com/the_spoon_theory/

premierlass

Blackrocks wrote: »

Can anybody tell me if Fibro qualifies for Long Term Illness Benefit??
I worked all my life after educ., and cant do anything now with pain.
would truly appreciate a reply asap. Thanks.

I have heard through the grapevine that it now qualifies you for Disability Allowance though it's very difficult to get this confirmed if you ask.

Laurendonegal

premierlass wrote: »

I have heard through the grapevine that it now qualifies you for Disability Allowance though it's very difficult to get this confirmed if you ask.

i am on disabillity allowance for fibro and have been for 4 years now, you need to have a diganoses made by a hospital consulant to recieve it . And when you go for the medical interview just make sure that you are aving a bad pain day by over doing it the day before

Laney xox

Laurendonegal wrote: »

i am on disabillity allowance for fibro and have been for 4 years now, you need to have a diganoses made by a hospital consulant to recieve it . And when you go for the medical interview just make sure that you are aving a bad pain day by over doing it the day before

Thanks for that info, I recently went for a review and was cut off my benefit!! I was only diagnosed with fibro the previous week so did,nt have my consultants report with me, I am devastated because I also have 3 slipped discs, 2 in my lower back and 1 in my neck, I have IBS, anemia and low moods. I have appealed but it does,nt help that I have to wait weeks for a decision while the bills mount up!! My back has given in again and Im felling really peed off at the moment!:-(

premierlass

Laurendonegal wrote: »

i am on disabillity allowance for fibro and have been for 4 years now, you need to have a diganoses made by a hospital consulant to recieve it . And when you go for the medical interview just make sure that you are aving a bad pain day by over doing it the day before

Sorry, I put it badly. I heard that you don't need to have a medical exam anymore to get Disability Allowance, you only need a diagnosis. Take that with a pinch of salt, but I heard it from a fibro group on Facebook.

Laney, I'm sorry that happened to you. I hope the appeal goes in your favour.

Laney xox

premierlass wrote: »

Sorry, I put it badly. I heard that you don't need to have a medical exam anymore to get Disability Allowance, you only need a diagnosis. Take that with a pinch of salt, but I heard it from a fibro group on Facebook.

Laney, I'm sorry that happened to you. I hope the appeal goes in your favour.

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I heard something along those lines too! I dont know how a doctor can judge you from spending 10 minutes in a little room with you. I would love to have them spend one day in my house when Im having a flare up. They will see how it affects not only me but my two daughters aged 4 and 5 and my husband who already has a stressful job, they have no clue. On top of that I have to look out my window everyday to see a neighbour who claims illness benefit working on cars all day long, makes me so angry! How does your family cope with your fibro, do you find them supportive? My husband is very good but I can see him ready to blow a fuse, he is under so much pressure, any advice? Thanks a million for the advice Premierlass!

premierlass

I actually have M.E., but I keep an eye on things to do with Fibro because I think a lot of the issues are the same for us, and there is someone in my family who was diagnosed with it.

I went through the useless medical exam as well, was rejected and got Disability Allowance on appeal. It was an enormous weight off my shoulders because there is no way I could have managed without it.

It does have a drastic effect on family life (and I'm not even married). My family weren't terribly supportive at first because they didn't want to accept it. I mean, I didn't want to accept it so I can understand, but the fact that everyone around me was telling me it was all in my head added hugely to my difficulties. However, they eventually did a 180 degree turn when it got to the point where I was bedridden for a few months.

Laney xox

premierlass wrote: »

I actually have M.E., but I keep an eye on things to do with Fibro because I think a lot of the issues are the same for us, and there is someone in my family who was diagnosed with it.

I went through the useless medical exam as well, was rejected and got Disability Allowance on appeal. It was an enormous weight off my shoulders because there is no way I could have managed without it.

It does have a drastic effect on family life (and I'm not even married). My family weren't terribly supportive at first because they didn't want to accept it. I mean, I didn't want to accept it so I can understand, but the fact that everyone around me was telling me it was all in my head added hugely to my difficulties. However, they eventually did a 180 degree turn when it got to the point where I was bedridden for a few months.

It definitely does have a drastic effect and I feel as if everyone is fed up with me, I mostly turn down invites of a night out with friends and I think they are shocked when I actually do turn up! We,ve had 5 family funerals in the last 2 and a half years. I noticed my 5 year old was having behavioral probs and there was some bullying going on in school too so I had a meeting with her teacher who in turn took my daughter aside for a little "chat". What she told me horrified me, My little girl told her teacher that her mammy was always sick and she thought I was going to die, she said she was afraid to make a mess at mealtimes because her mammy is so tired and she does,nt want to give me extra work, I was broken hearted. Ive since told my daughters that I do have an illness but I am not going to die but sometimes I need a big rest because I am very tired and I soemtimes have sore bones. I dont know how else to explain it to then but I wanted it to be very short and simple, so far it seems to have worked!
I wish you the best of luck with your M.E, it is so hard to get through each day not knowing what the next day will bring. Thank you again for your advice and support!

femur61

Has anyone used this to alleviate symptoms of fibromyalgia. Not only are my muscles stiff but I get massive lumps on the back of my neck.

notcrazy

Hi

For the last 2 days I've had difficulty walking and my legs are feeling very funny, they are numb and the pain I've always had is gone! Thats good but I feel like I can't control them at all. It's like after you do really strenuous exercise but it's multiplied by 10 or so. Has anyone else ever had this it's very worrying for me.
Any ideas anyone?
Thanks

Not crazy (or maybe I am)