If you are suffering in pain and suspected as suffering from fibromyalgia and getting no help from your Doctor or the Hospital.
The Sheffield Fibromyalgia Self Help Group meet once per month to help and support fellow sufferers.
We have recently launched a new website to provide information and advice, visit our website at sheffieldfms.org.uk for more help.
The group is run by volunteers and self funded.

If you know of anyone who needs help and support, tell them to contact us via the website.

Alan
FMS Member

Hi Alan,

My sister in Manchester has fibromyalgia. Do you know of any good internet resources for her?

I've been seeing a Homeopath for Fibromyalgia treatment and am so much better than when I was on traditional medicines.:)

I found a chiropractor quite good for mine. I havent joined the self help group because I dont like focussing on my problems too much. I realise that for some people it will be helpful though.

i have fibromyalgia and have tried loads to help my symptoms but nothing seems to help
i have just heard about the perrin technique
has anybody had it
is it any good because i dont want to throw more mney away on more treatments that dont work

If you are suffering in pain and suspected as suffering from fibromyalgia and getting no help from your Doctor or the Hospital.
The Sheffield Fibromyalgia Self Help Group meet once per month to help and support fellow sufferers.
We have recently launched a new website to provide information and advice, visit our website at sheffieldfms.org.uk for more help.
The group is run by volunteers and self funded.

If you know of anyone who needs help and support, tell them to contact us via the website.

Alan
FMS Member

Hi

I suffer from fibromyalgia - it's a terrible condition. My GP did diagnose it actually after years of pain.

If you are suffering in pain and suspected as suffering from fibromyalgia and getting no help from your Doctor or the Hospital.
The Sheffield Fibromyalgia Self Help Group meet once per month to help and support fellow sufferers.
We have recently launched a new website to provide information and advice, visit our website at sheffieldfms.org.uk for more help.
The group is run by volunteers and self funded.

If you know of anyone who needs help and support, tell them to contact us via the website.

Alan
FMS Member

yes i did that, you dont mention the cost. there are meeting during the day for those who do not work, i do work and have this condition - i work full time! I want someone to explain to my family how hard this is for me.

i have fibromyalgia and have tried loads to help my symptoms but nothing seems to help
i have just heard about the perrin technique
has anybody had it
is it any good because i dont want to throw more mney away on more treatments that dont work

what is the perrin technique?

Just noticed this link from my monthly Carer's Magazine, it says it's a new resource http://www.fibromyalgia-support.net/

Hi Alan,

My sister in Manchester has fibromyalgia. Do you know of any good internet resources for her?

Hi
The main Fibromyalgia Association uk website is a good source of information and help.
Join the Forum there are many people who are willing to help and give good advice.
You may find someone closer to home who you can contact for support.

i have fibromyalgia and have tried loads to help my symptoms but nothing seems to help
i have just heard about the perrin technique
has anybody had it
is it any good because i dont want to throw more mney away on more treatments that dont work

Hi
The perrin technique is quite new and is based on toxins in the body. I feel that does have some relevance.
My chiropractor told me that my FMS is caused by toxins getting into my bloodstream therefore affecting the muscles, tendons etc.
In my case he said its all down to the food not been properly digested due to lack of enzymes and poor modern day diet.
I have benefited from avoiding certain foods and drink and taking digestive enzymes. Other members of our group in Sheffield and other parts of Britain have benefited from the Norah Wickerson combination approach, which basically involves changing your diet.
I personally don't think the perrin technique on its own would work, unless you changed your diet.

my friend as fibromyalgia and now as been referred to a specialist i think it's a endocrinologist is this normal for this condition

I have had fibromyalgia for the past year(diagnosed) probably 10 years before that and to be honest at this moment in time feel like throwing the towel in. I am still working 32 hours a week, my doc seems to think that this is good for me, my hubby seems to think there is nothing wrong with me despite being in severe pain for large parts of every day and being virtually unable to sleep at night.
I tackled my doctor about this problem, I am thinking of trying for sick retirement from work (I am 53), he said he would not support a sick retirement from fibromyalgia as it is not a life threatening complaint and may go away eventually. I beg to differ, it is life threatening when people can get so low because no one understands.
Sorry a rant with tears in my eyes!

Hi all,

I visited Norah Wickerson in Derby, she made a lot of sense and I tried her approach for quite a while. I perhaps didn't have quite the success others had (I spoke to a few people) but that was because of my commitment.

http://www.tacklingfibro.co.uk/

I have had fibromyalgia for the past year(diagnosed) probably 10 years before that and to be honest at this moment in time feel like throwing the towel in. I am still working 32 hours a week, my doc seems to think that this is good for me, my hubby seems to think there is nothing wrong with me despite being in severe pain for large parts of every day and being virtually unable to sleep at night.
I tackled my doctor about this problem, I am thinking of trying for sick retirement from work (I am 53), he said he would not support a sick retirement from fibromyalgia as it is not a life threatening complaint and may go away eventually. I beg to differ, it is life threatening when people can get so low because no one understands.
Sorry a rant with tears in my eyes!

If you can, pack work in. I had to and it was the best thing Ive ever done. But if your doctor wont support you for ill health retirement he probably wont give you sick notes for incapacity benefit. It might mean a radical lifestyle change.

I was diagnosed with Fibromyalgia in 1990, things are bad. I agree with what the posters have said on here, l just have had to learn to live with it.

Decided to change docs within the practice and went to see the chosen one last night, what a difference, this doc has more sympathy with the complaint and is more willing to try and help me manage it rather than just saying 'get on with it'
So things a little sunnier today, all we ask is to be listened to isnt it!

I have worked through out this curse, but have been away from work for a while as it has been really really bad. I asked my doctor about the perrin technique and he said i could try it but he was dismissive due to the nature of the condition. What annoys me is that I can no longer work, I try to explain again and again and they say well I know how you feel. I have tried amitryptiline when I go to bed.. as advised but it does not help.

Hi all,

I visited Norah Wickerson in Derby, she made a lot of sense and I tried her approach for quite a while. I perhaps didn't have quite the success others had (I spoke to a few people) but that was because of my commitment.

http://www.tacklingfibro.co.uk/

Anyone suffering from this condition would benefit from changing their diet as recommended by Nora Wickerson. I have personally benefited by changing my diet and its stabilised my condition but I have lost two and half stone in weight.
You need to be on the diet and stick to it rigidly for a least two months! Anyone who finds it hard to stick to the diet would benefit from taking digestive enzymes.

A poem about my experiences suffering from FMS For anyone who likes poetry,

Fibromyalgia

My minds all gone foggy, am I going insane?
No! I’m lost in a maze wracked with pain.
I’ve visited my Doctor, who shows no concern,
And now I don’t know which way to turn.

This debilitating pain is affecting my life,
Unable to work and causing me strife.
No one seems to understand how I feel,
Suffering from an illness they say isn’t real.

Painful symptoms causing me so much stress,
Are the reasons why my life’s in a mess.
Sleepless nights, I struggle to get out of bed
All doctors keep saying it’s all in your head.

I wish I could get better and grow a little stronger,
For, I can’t stand this pressure pain very much longer.
This endless suffering is weakening my resistance
And my life’s no longer an easy existence.

Winter is on its way and days are getting colder,
I’ve got problems in my arms, legs, back and shoulder.
Unrelenting suffering, I struggle along in vain,
Pulsating, throbbing and penetrating pain.

To my doctor I’ve also honestly confessed,
To suffering fatigue, anxiety and being depressed.
And all they say is that there’s nothing to fear,
But life’s not easy, living with Fibromyalgia.

Life is not easy at the moment, Fighting a legal battle with my employer and their insurance company! They wont pay me my legal entitlement of sick pay!
Even though I have been diagnosed with FMS by two specialist consultants, occupational health therapist and a Chiropractor, the company have said I am faking my illness and being dishonest about my health claims.
BEWARE! Anyone suffering from this condition and is covered with a long term sick scheme with their employer who uses UNUM PROVIDENT INSURANCE! This company will use underhand tactics to refuse paying you your entitlement. They will demean and defame your character and make false allegations about you.

If you would like help or advice regarding FMS and fighting for justice! Don't hesitate to PM me

Hi,
I was diagnosed in March this year after many years of
pain and going back and forward to the Doctors

Is it a stress related disease

Is it a stress related disease

No, it's not, but stress could enhance the negative aspects considerably.

I only asked because my boss was suffering from stress and developed the symptoms. Does this condition mainly effect woman?

Fibromyalgia seems to go hand in hand with ME

There are a lot of related symptoms and overlap between the two, and some people think one is part of the other, or even the same thing.

I mention this because ME is now recognised by the World Health Organisation as a bona fide illness, which means it has to be taken seriously by doctors and government funding made available for research and treatment.

It's a very political issue as the government has spent many years denying it exists (and possibly responsible for putting out anti ME propoganda) for obvious reasons - it's going to cost them money.

I just read the poem further up this thread with tears in my eyes.

My friend once asked me what it feels like to suffer from Fibro, the only thing I could say was that it felt like your body is trying to punish you....... only someone who has suffered from this hellish condition truely knows what it feels like, no matter how well you describe it.

I go to the Fibromyalgia self-help group when I can, and it's not just about focusing on our problems, we like to have a laugh as well (we have to - otherwise we'd cry having to cope with a condition that a lot of people don't understand). I manage to work part time, but sometimes find it a huge struggle, not only pain-wise but coping with the brain fog aswell. Iv'e lost count of all the money I've spent trying to find something that will help, but so far it's a case of living with it as best I am able. It helps to know that there are others in a similar boat.

It can very much be stress related thing I'm afraid and like ME there are many reasons why people end up with this condition, therefore, there can be many ways in which someone needs to heal. I've just posted this info somewhere else on a ME thread but I attended a clinic in London for C.F.S and they have been FAB!
www.optimumhealthclinic.com, there is also more info here under ME section- http://www.conscious.tv/healing.html

Thanks very much for the information. I have read a book by Alex Howard which was good, I know he has connections with the Optimum Health Clinic in London. Is it very expensive to have a consultation?

Hi

I am currently on their "90 day program" which yeah is not cheap but then cheaper than some other treatments I have seen. Their costs are on their website and they have different options and I had a couple of conversations before signing up to, they've been an absolute breathe of fresh air for me and I firmly believe in their techniques.
http://www.freedomfromme.co.uk/


Claire

Thanks for your message Claire. I contacted Optimum Health clinic, a nutritionist is going to ring me. It is so very expensive and consultations would have to be by phone which I'm not sure would work out without being seen in person. I wondered if the clinic on Abbeydale road would be a little less expensive, the person there trained at the Optimun Health clinic I think.

Thanks for your message Claire. I contacted Optimum Health clinic, a nutritionist is going to ring me. It is so very expensive and consultations would have to be by phone which I'm not sure would work out without being seen in person. I wondered if the clinic on Abbeydale road would be a little less expensive, the person there trained at the Optimun Health clinic I think.

Contact Access to Work. http://www.direct.gov.uk/en/DisabledPeople/Employmentsupport/WorkSchemesAndProgrammes/DG_4000347

I had a quick look at the access to work link but I can't see how it would help fund treatment? Or have I not read it properly?

AtW is help for people in work, or with a definite start in work who, through illness or disability, could be disadvantaged in the workplace. Basically, if approved, it can pay for things like special IT equipment, or special chairs (you get obsessed with chairs working on that section!), or anything specifically work-related really.

It wouldn't fund medical treatment as such, though.

i can help with this condition tel me stephen on 0114 2313501

In what way can you help Chaucer? I'd like to know a little more before making any telephone calls.

i help people with aches and pains i am a bioflow magnotheraphy consultant its basically magnetic braclets i would b a case i would come along with a collegue of mine who would give a demonstration let the people try them on and if any1 wants to try 1 then we would give a donation to the group funds in return so every1 benefits if u want to contact my colleque as well her name is joan and her tel no is 0114 2881970 is has spoke on radio sheffield 3 times about these products and we r regonised by the british medical journal.

Hello all.

I do not live in the U.K. - but I can tell you a horrid story that happened to me. GP's do not understand or want to admit fibromyalgia and chronic fatigue is real. I was primarily dagnosed by the chiropractor he sent me to - lower back pan/mechanical hip problem etc. Hence, I was iagnosed by my chiropractor as having many tender points up and down my back and outer estremities. My GP did not believe him.

I cannot stress ths enough - go to a rheumotolgist for a "real diagnosis" - I was determined with 18 (out of 18) tender points.) Notwithstanding all of this, my neck, lower back ect still hurt very much despite all the chirporatic appointments (in order to set my back on track). 2 months later I insisted on a catscan and xrays - though my GP never gaveme the results. I also had not only arthritis, but advanced discc degeneration.

I was working at the time - and my GP just wanted me to go back to work as quickly as possible - my rheumotologst kept insisting that the insurance company would not pay for fibro/chronic fatigue. I worked very hard and too quickly trying to getmy body back in shape. NOT ONE doctor understood that by going to the gym - I was actually re-injuring myself. TEY ALSO DID NOT UNDERSTAND that the different medications used made me more dizzy and off balance. I was honest - I told them why I could not take the medication - but it fell on deaf ears.

And because within a sx month period I was trying to hurry my recovery -my physical accommodation papers were not done right (at that point, I was so depressed a) my GP still didn't think it was a real illness and b) pertinent catscan results and xrays were not forwarded to my specialist.

Fibromyalgia affects cognitive ability, is also considered neurological, a person may suffer from constant dizzy spells and vertigo etc etc. All ofmy doctors made me feel to some extent that it was anxiety/stress/depression. Albeit, there was a reason for this as well. The non-support I got from my GP and the physically labour intensive/noisy/loud department I was in. The doctors would not believe that the department was so physically labour intensive and also an anxiety-ridden one.

So the sotry goes - because of ALL ofmy doctors' inability to fully understand and BELIEVE te environment I was n - I felt no recourse but to quit.

I recently found out that the insurance compnay from that college DID indeeed provide long-term disability for fibromyalgia/cronic fatigue etc and that indeed I had every right to be transferred.

Doctors are too much into their own politics. DO NOT THEM them bulldoze you into thinking that this illness is not real - because it is. Bring an advocate with you if at all possible - document your symptoms every single day (something I should have done) and insist on photocopies of ALL test results and take the time (yourself) to go over them. My inability to do this; left me no recourse but to quit my job. You see - if all of the doctors were on the same page; I would not have been so stressed - which of course affects your physcal and emotional state.-
If a medication does not agree with you - get off of it - andMAKE SURE THEY KNOW WHY!!! Sick leave or not - stand your ground - doctors are inherently AFRAID of coporations and insurance companies - too bad!!!!

With all of their mistakes and attitudes - I have pretty much lost my life. The coporation I was working for WANTED me to apply for LTD - reason I didn't - I knew my doctors did not want to get entangled wit insurance companies. Who lost? The patient and employee.

Doctors rarely listen.'

One other important point to make - if you require chripractic treatment because of a back condition (which exacerbates the fibromyalgis) DO NOT i repeat DOT go to an agressive/invasive chirporactor. Of course, I did not have any choice in this - since the chirpractor was my GP's friend (and worked out of thesame hospital). Two and months down the road, dizzy speels did not go away and they were intensified - not to mention the fact I started have dental problems and my hair was starting to fall out. GO TO A NON-INVASIVE chiropractor - your body is in a gentle state wth fbro/chronic fatigue and cannot take aggressive action. What doctors refuse to understand is that everyone's body is different - so if ou are on SICK LEAVE due to this insidious invisible illness - STAND YOUR GROUND and get a LAWYER - Wish I had!-

I'm glad (and I state this sarcastically) I hope the doctors are happy - not only the department for which I worked hurt my back and incurred fibro/CFS - butmy doctors (having forgotten about the Hippocractic Oath) failed me immensely.

Also, inist on seeing a neurologist - there are two schools of thought out there - Fibro may be autoimmune and/or neurological. My GP of course tought it was neither.

Sorry to hear of the bad experiences you have had, your story is all too common unfortunately. There are some G.P's who recognise Fibromyalgia and M.E. but they are few and far between. I have been back and forth many times to different G.P's, and come away yet again feeling as if I wasn't being taken seriously when every investigation comes back normal. I decided to find my own way through eventually. I read anything and everything I can about the condition (which appears to have many various contributory factors). I have also tried many therapies - I daren't count the cost. Yes, I still have pain; Yes, I still have Fibrofog, but I feel that by understanding more about it, I am more in control so to speak, and somehow finding a way to cope the best I can. Hopefully through research, etc., one day more G.P's will realise the life-limiting effects this condition has upon people.

Hi Nova,

Thank you for the input. The thing is, my GP had the proof he needed from the rheumotologist (18 tender points out of 18) ... that is how it is OFFICIALLY diagnosed. What bothers me most is that the GP did not even think of sending my catscan report to the chiropractor and only on request (my rheumotologist was writing up my physical accommodation papers) that this report was sent.

What infuriates me furthermore: the chiropractor could have easily done permanent damage to my spine and neck (I had bulging discs)

and the rheumotologist insisted that insurance companies did not pay long term for this - THAT IS NOT SO!!!! He (who diagnosed me as having tis condition) did not take into account the severity of my back problem.

I ask you - between specialists, chiropractors, GP's and politics - I lost!

One thing is for sure with fibromyalgia there are the following symptoms:

cognitive/memory impairment
dizzy/exhaustion spells
all over body pain
joint pain
numbness/tingliness
myofacial numbness etc etc etc

One thing I would like to pass along - because of the 'vertigo' aspect of this illness - a person cannot do one physical action repetively/continuosly.

I was pursuing alternative therapies and they were working - unfortunately I was not 'smart' enough to tell the doctors I was still taking medication (that would have appeased them i.e. insurance companies)- you see one of the problems with fibromyalgia (thatmost physicians do not know) is it can be an immense release of the body's toxins, thereby bringing on the malady
.
If there is retribution in any of this - I hope that these same doctors one day experience it for themselves. They still have teir jobs andlives - I had to bail in order to save myself further extreme stress.

Anyway enough about that. So much in this world could be avoided if people would listen - period.

I only asked because my boss was suffering from stress and developed the symptoms. Does this condition mainly effect woman?

In answer to that question - yes ONLY because many men do not report it. Did a little research on this - if any one parent has this illness, then your children (male or female may develop it).

Best thing to do is preventative medicine - monitor your stress levels, eat well balancedmeals and do not injure your back i.e. too much physical labour.