Fibromyalgia

[emilyt]

Just wondered if anyone else suffered from this illness. How long you have had it and has anything helped you relieve the pain of this condition. I know many doctors don't understant it. Would love to hear of anyone else's experiences. Thanks in advance

[bluezone]

My mum has suffered with this for approx 6 years. Not many pain killers touch it. Sometimes her muscles go into spasm which make her drop things etc.
She finds it very annoying at times cos as you say not many people understand that the aches and pains are always there.
How long have you had the illness?

[shokadelika]

If you GOOGLE "fibromylagia vitamin D deficiency" you will find lots of information.
Are you getting enough vitamin D in the summer and more important the winter?
The disease if often misdiagnosed Vitamin d deficiency.

www.vitamindcouncil.com is an excellent place to start.

[Ted_Hutchinson]

Is fibromyalgia just a vitamin D deficiency (http://www.knowledgeofhealth.com/executelink.asp?story=Is%20fibromyalgia%20just%20a %20vitamin%20D%20deficiency)
and
Two More Diseases That Could Be Treated With Vitamin C (http://www.knowledgeofhealth.com/executelink.asp?story=Two%20More%20Diseases%20That %20Could%20Be%20Treated%20With%20Vitamin%20C)

Although zipvit are reasonable for vitamin c their vitamin d is the wrong sort. The best sort is Vitamin d3 which is the same as your skin makes on direct exposure to sunshine. Until September you shouldn't need to buy vitamin d3 cholecalciferol as you can make around 12,000iu in half an hours sun bathing providing you expose as much skin as possible. DON'T ever get SUNBURNT as occassional sunbathing which results in burning is linked to melanoma. REGULAR SUNBATHING without burning is linked to fewer breast cancers fewer colon cancers fewer prostate cancers and I'll spare you the rest of cancers but won't let you forget the MS connection. The more your child gets outside the lower will be their risk of getting MS in later life. If you have MS the higher your vitamin d3 level the fewer bad patches will occur.

I haven't made a mistake putting links to both vitamin d and vitamin c. Fibromyalgia is thought to be an autoimmune condition and therefore vitamins which support the immune function and are anti-inflammatory and promote collagen formation will help. Bill Sardi links to Ascorbate (http://www.lulu.com/ascorbate) which is a book about vitamin c you can download for around £3ish. It's a bit heavy going, but it is very interesting and it explains why the research findings for HIGH DOSE vitamin c present a somewhat confused picture. The authors others book about vitamin c explains why the current recommendations for Vitamin c are fundamentally flawed. Again detailed reading for the enthusiast but still interesting.
'Ridiculous Dietary Allowance' (http://www.lulu.com/content/92249)

As you are aware we aren't allowed to give anything that resembles medical advice here so the above is simply information which may be moneysaving if it helps you spend your money on supplements which you don't have to pay for, because you get them free from the sunshine, or which are cheap and known to be effective if taken in effective amounts.

Making sure you understand how vitamin c depletes once you've swallowed it also enables you to use it in a moneysaving most effective manner. The Hickey/Roberts books explain how the half life (time it takes your body to lose half the supplement just taken) is only half and hour. This means taking it in one dose means you lose most of it. You therefore need to either use slow release vitamin c or stage your intake through the day. I'm now taking 500mg every 4 hrs at 7am 11am 3pm 7pm and 11pm. that way my blood level of ascorbate shouild stay at a higher level than can be achieved by taking a large dose in the morning, or even 2 larger doses morning and night.

[Otago]

It might be worthwhile asking the GP to refer you to a physio; they can advise you on different methods of pain relief and can talk to you about stretching and graded exercise. I know exercise might sound like the last thing you would want to try but it can really help. There are also support groups that can be a good source of advice and information.

[twink]

see www.thirdage.com (http://www.thirdage.com) they have an article about it

[Savvy_Sue]

A former colleague who had this was referred to the Pain Management Clinic and spent quite a useful week there, I believe.

[crutches]

i have it,have been very bad for the past few yrs.constant pain, nothing touches it.better in warmer weather.very bad during periods.i'm on crutches now.
its quite depressing as you look well and gp's do'nt really understand it.
If you are in a lot of pain try a pain management clinic via gp referral.?The expert patient programme can also help a lot with support.

http://www.ukfibromyalgia.com/forums/index.php

http://en.wikipedia.org/wiki/Fibromyalgia

http://www.coventrypainclinic.org.uk/musclepain-fibromyalgiasyndrome.htm

http://www.fibromyalgia-associationuk.org//index.php?option=com_content&task=view&id=28&Itemid=44

good luck!!!.It is liveable with but takes a lot of effort from you,friends and family.

[twink]

did you find the article it should have been www.thirdage.com/health/

[nearlyrich]

I was diagnosed with FMS last year, I thought I was destined to sit on my sofa forever, I managed to get better, not 100% but managing the pain and working again with an employer who appreciates that some days I get more done than others. I lost 1 and a half stone which has helped, still got a few lb to go to get to my goal weight, I know I am lucky as some people have a much worse time than I have.

[emilyt]

Thankyou to everyone. I can't believe how many of you have replied to my thread. I have been suffering now for nearly 4 years. I had to give up my job as a carer which i loved. I am still not fit enough to work. I consider myself very lucky as i have a very supportive family. I am 37 and my husband and 2 daughters aged 16 and 19 are brilliant. I do get very down but it helps to share a problem. I don't know anyone else who suffers with it. I appreciate everyone being so honest and open. As crutches said we look alright but the pain is unbearable. I have had physio and accupuncture. Also been pain management. I recently went to the rheumatologist who suggested i joined a gym and went swimming. This hasn't helped and i feel so much worse. I do take vitamins. i just live a day at a time and if i can't do that i just get through a hour at a time. I'm hoping that one day it will actually not rule my life as much. Sorry to sound so depressing. But a big thankyou to all of you who have responded. I hope and pray that the doctors will find a miricle cure soon. The rheumatologist also suggested i took anti depressant which i said no to. I am not depressed just feel down because of the pain. Has anti depressant helped anyone else.

[shokadelika]

Is Fibromyalgia Just a Vitamin D Deficiency?

From www.knowledgeofhealth.com

In retrospect, it is not surprising, that the decades-long period of widespread public advice to “stay out of the sun” and to wear sunscreen lotion in order to prevent skin cancer, which begin around 1971, was followed by an increasing number of patients arriving at doctors offices complaining of symptoms of bone, muscle and joint pain. Since there is no blood, x-ray or other test that can confirm a diagnosis, this amalgamation of symptoms was termed fibromyalgia.

This syndrome was earlier called fibrositis, but there is really no inflammation involved in fibromyalgia. In 1987, it was first recognized by the American Medical Association as a "true" illness and cause of disability. The drug-oriented medical profession then treated the symptoms with pain killers, antidepressants and a variety of other pills never delving into its likely origin, a vitamin deficiency.

[nearlyrich]

My doctor gave me anti depressants (amitryptillyn(sp)) on diagnosis and they made me more lethargic, I stopped them after a few weeks.

My worse problem apart from the pain is insomnia, I still suffer but I try not to stress about it and if I have a couple of bad nights I take a sleeping tablet otherwise I am useless.

I also have the memory problems associated with FMS, sometimes it can be embarrasing because at work I forget peoples' names, the upside is it has made me more organised because I write everything down I have to do, sometimes I forget where I put the list.:o

I have found that exercise helps but it is hard to get up and exercise when every bit of you hurts. When I was first diagnosed I had to steel myself for every movement because I knew it was going to hurt, now I wake up some days relatively pain free and I get as much done as possible.

On the sunshine front, I have really fair skin and I burn so easily I have always tried to keep in the shade, even high SPF doesn't really help. I do like the warmer weather but not too hot.

[Ted_Hutchinson]

On the sunshine front, I have really fair skin and I burn so easily I have always tried to keep in the shade, even high SPF doesn't really help. I do like the warmer weather but not too hot.This is the paper Prevalence of Severe Hypovitaminosis D in Patients With Persistent nonspecific musculoskeletal pain ... (http://www.mayoclinicproceedings.com/pdf%2F7812%2F7812a1.pdf)GREGORY A. PLOTNIKOFF, MD, MTS, AND JOANNA M. QUIGLEY, BA showing the amount of vitamin D insufficiency in people with pain.

and this paper Vitamin D Deficiency: What a Pain It Is MICHAEL F. HOLICK, MD (http://www.4genspec.com/docs/Mayo_Clinic_Vitamin_D_article.pdf)
says Vitamin D deficiency can be treated easily by giving the patient an oral dose of 50,000 IU of vitamin D once a week for 8 weeks. Long-term prevention of vitamin D deficiency can be accomplished by giving 50,000 IU of vitamin D once or twice a month.
The link shokadelika provided to the Vitamin d council has a link to a place where you can buy 50,000iu tablets if you are unable to go outside. They also supply 5000iu tablets which you could take daily to restore your vitamin d3 level to one which controls the amount of pain you suffer. 200 @ 5000iu tabs cost around £17 delivered

I've used lots of 400iu d3 tablets from Healthy direct to get my levels up early this year and since April have been out in the sun whenever it is possible. My levels of pain are much reduced and energy levels are higher. I will be using the 5000iu tablets from the end of September or occassionally if we get a spell of cloudy weather before then. They have worked out the young males use between 3000 and 5000iu vit d3 daily so someone not going outside much at all would need to average 4000iu to obtain optimal levels. People who do regularly go outside but don't specifically expose their skin and frequently use sunblock would find an average 1500iu daily sufficient to rasie vitamin d3 status enough to improve their cancer protection status so that means around 4@400iu tabs or a 5000iu tab twice a week.

(http://www.4genspec.com/docs/Mayo_Clinic_Vitamin_D_article.pdf)

[bluezone]

Hi again,
My mum is on crutches most of the time and yes tp others she can look well but be in a hell of a lot of pain.

She also suffers from insomnia which gets her down, although it can sometimes be nice if I go out on a night off and stay there getting in after 2am and she is awake so we can have a cuppa whilst I wind down and she waits for her tablets to work.

Does anyone else find they suffer from restless legs? The doctor has given her some tablets that are supposed for parkinsons which seem to help - anyone else tried these?

Oh isn't the forgetfullness a pain? mum gets frustrated aat times with this.
I am her main carer through a scheme called 'direct payments'. I help do cooking, cleaning, helping her get up (doing more on bad days).

One doctor did tell her that to help explain to people how much pain FMS can bring, get them to grip the muscle between the shoulder and neck until it hurts and that is the pain that FMS sufferers feel all the time.

I hope they can find a cure for this.

My mum feels better in summer with the heat so her and dad try to get away to somewhere hot in the winter for a couple of weeks.

My mum takes vitamins everyday to try to help relieve the pain but no joy.

Me x

[umngane]

Have you ever been tested for Lyme disease or other tick-borne infections? Lyme disease is notoriously difficult to diagnose and is a great mimicker of other illnesses. Many ME and Fibromyalgia patients have been misdiagnosed and in fact are suffering from Lyme disease. Be aware that if you have had a negative antibody Lyme disease test this, in NO way, is a conclusive result (most of the antibody tests are notoriously unreliable and few doctors in the UK are aware of this, or the prevalence of Lyme disease for that matter).

The best way to get conclusive proof of a Lyme disease infection is to have your blood screened under the microscope by a specialist. I know of only one specialist in the UK that provides darkfield microscopy screening. He sends out blood slide kits to those who are unable to come to his clinic and is willing to have telephone consultations if need be. If you would like his details feel free to e-mail me.

I was (mis)diagnosed with ME 5 years ago. I developed arthritis type symptoms three years ago. Recently I had my blood screened under the microscope by this specialist. He found Borrelia spirochetes in my blood (Lyme disease)! I am now being treated for Lyme disease with antibiotics and am starting to see a slow improvement. My arthritic and lethargic cat was also screened and he too has a Lyme disease infection (he is improving on antibiotics everyday)!

Information on Lyme disease –

The EuroLyme Yahoo group is a good resource and support network.

http://www.lymediseaseaction.org.uk/lyme.htm

http://www.immunesupport.com/library/print.cfm?ID=6743

Huge range of possible symptoms - http://www.lymediseaseaction.org.uk/symptoms.php


NB. Please note that I am in no way affiliated with this specialist and am not a doctor. I am just speaking from personal experience and hope that it may help someone else.

Good luck with everything!

P.S I also have a Vitamin D deficiency.

[urban spirit]

Hi emilyt

I have M.E. wich as you probably know is similar. Had it for nearly for years. Take 2 different pain killers but as all have posted, none touch the pain.

Fibromyalga like M.E. is mostly disbelieved 'cos we look 'fine' - even though we're in a ridiculous amount of pain and, for me, cant lift my head up off the pillow some days i'm so exhausted. Explaining to people when you have to ........phew! I give up http://img.moneysavingexpert.com/icons/icon7.gif

I'm at hospital tomorrow for 'treatment' which consists of graded exercise and being told to stop unhelpful thoughts!!!!! Helping???? Not a bit.

Would be nice to support each other on ths website, not sure which forum it would go under off the top of my head.

Thanks to all who posted links/info etc, will have a good look another time - just come in and i'm in ridiculous amount of pain!

Welcome to umngane, a good first post!

Many thanks

[zzzLazyDaisy]

Hi, I've had FMS for 4 years following a car accident, when I got whiplash. My sleep was disrupted and my rheumatologist advised that must be got under control because sleep disturbance/deprivation exacerbates FMS symptoms. I take 50mg Trazadone at night, and wear a soft collar (I have sponylosis in my neck). This helps me get a decent nights sleep, and this has helped to reduce the pain levels.

I also agree that sunshine helps tremendously. As soon as the sun peeks through, I am out there. Winter is miserable, I am often bed or house bound and in awful pain. I just want to hibernate. I do get depressed in the winter sometimes, but it is a reaction to the condition, not the cause of it. I never go on holiday in the summer, but always try to get away at least once in the winter. I just look for the cheapest holiday to anywhere where the sun is. It makes so much difference to me, and often the effects last for a few weeks after I get back. I always arrange wheelchair assistance at the airport and a ground floor room (or room near a lift) in the resort.

Also if there is a Total Fitness leisure centre near you, they have hydrotherapy pools which are brilliant - like stepping into a warm bath. Or use a whirlpool/jaccuzi if you can.

On thing that definitely does NOT help is pushing yourself to exercise 'to build yourself up'. Of course everyone is different, but there is a big risk that you will build up to a relapse.

I do try to do some activity each day, but by 'activity' I mean walking outside to look at my garden. Or something gentle like that.

I have a cleaner who comes in for one hour twice a week. That has helped me tremendously because it means that I can save my precious energy for doing things that I enjoy, rather than exhausting myself changing the bed/hoovering etc.

Wishing you all the best

Daisy

[Ted_Hutchinson]

I'm at hospital tomorrow for 'treatment' which consists of graded exercie and being told to stop unhelpful thoughts!!!!! Helping???? Not a bit.My own condition PPS overlaps symptoms with ME/CFS and I've heard it argued that the Polio vaccination simply made vacant a space in the disease spectrum of paralytic disorders which ME/CFS has now occupied. Although Polio vaccination is trumpeted as being an example of mans triumph over disease, there are as many if not more people now virtually paralysed by the new conditions occupying the space previously dominated by polio. Anyway it was through the connection between PPS and ME that I met Betty Dowsett. If ever you get a chance to meet her then take it. I think she talks more sense about ME than anyone else.
Time to put the exercise cure to rest ? (http://www.25megroup.org/Information/Medical/dowsett%27s/exercise%20cure%20to%20rest.htm)
Is Graded Exercise Safe for People with M.E.? (http://www.meactionuk.org.uk/ScotME_05_Is_Exercise_Safe.htm)

If instead of proceeding with the polio vaccine route we had followed the treatment regime (http://www.seanet.com/%7Ealexs/ascorbate/199x/landwehr-r-j_orthomol_med-1991-v6-n2-p99.htm) there would probably be a lot less paralysis in the world today but Sabin spiked the vit c research as he had his own money spinning plans to forward.

[bluezone]

I am going to show this thread to my mum tonight so that she can see that there are others out there with FMS who struggle (is that right?) with everyday life.

Bluezone x

[emilyt]

Hi there bluezone,
What a caring daughter/son you are. Please show this thread to your mum. I don't know anyone else that suffers with this condition. It really helps that other people understand what i am going through and i am sure it will help your mum too.I am sure your mum will soon want to be posting threads too. Please send her my best wishes.
Love
Emilyt

[thetope]

i was diagnosed with FMS about three months ago after suffering for about 3 years. Thankfully the pains aren't so bad that I am unable to work but through last winter life was very difficult.

I have just started a course of anti-depressants (e-citalopram aka cipralex) which seems to be helping a lot so far (have been on them 5 weeks now). My pain levels have reduced a lot and i am finding myself with a lot more energy too. I am still suffering from sleep problems but that seems to be gradually getting better as well.

My concentration and forgetfulness (eg pausing in the middle of a sentence and forgetting what i was saying or not being able to get the words out right) doesn't seem to be getting any better so far but perhaps, i'm hoping, this will come with time.

my boyfriend does not really understand my problems and it has caused a huge stress on our relationship, things are better now that i am improving but i am not sure if the damage has not already been done...

[Ted_Hutchinson]

last winter life was very difficult. When your vitamin d3 levels were at their lowest. Using sufficient levels of vitamin d from the end of September to March, to keep you levels the same as during the summer may be helpful.
I have just started a course of anti-depressants (e-citalopram aka cipralex) Probably the best of the ssri's see escitalopram oxalate (http://www.crazymeds.org/escitalopram.shtml) unfortunately it may not do anything for your sexlife but as with all side effects it's not everyone that gets them so you may be lucky.

Using high dose vitamin d for depression (http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=506781) will not have adverse effects on your sex life and if you get your vitamin d from sunshine it won't cost anything either.

[bluezone]

Hi there emilyt,
I am her daughter and yes I will try to get her registered on here so she can do some posting herself.
It is nice to know that there are others out there with FMS.

Bluezone x

[urban spirit]

Hi All

Quick post as just come back from hospital and absolutely shattered/in pain.

Anyone who's posted on this thread or know someone with the conditions mentioned here (or any lurkers!) please feel free to pm me for a chat and some support. Having someone that undrerstands your condition can be such a relief.

Ted - I always look forward to your posts as they're full of such valuable information. Can I ask what PPS is please? Don't feel pressured at all to answer.

Bluezone - try and coax your mum on 'cos we're a friendly bunch who'll understand. 'Struggle with everyday life' is definitely correct!

Hospital are telling me the M.E. is due to deconditioning - they couldnt be more wrong.

Lokking forward to all your posts!

Take care all and keep smilinghttp://img.moneysavingexpert.com/icons/icon7.gif

[Ted_Hutchinson]

Can I ask what PPS is please? Post-Polio Syndrome Fact Sheet: National Institute of Neurological ... (http://www.ninds.nih.gov/disorders/post_polio/detail_post_polio.htm)

[urban spirit]

Thanks for that Ted. Indeed does look like your condition overlaps M.E. and Fibromyalgia symptoms. Cant wait to read through the Betty Dowsett info - I say I cant wait cos i've had a few attempts but my heads mush so info is not going in. I do put things off thinkking my head will clear a bit, but it doesnt change that much:rolleyes: I used to have such quick and clear brain, with an aptitude for complex information! If anyone finds one can you post it back to me.........;)

[urban spirit]

Hi emilyt

To answer your original question (if I can rmember it!) -

Doctors - I have come across many who dont understand it but think they do, or dont believe in it at all. I was told by a GP that M.E. was "a very contravertial diagnosis" - okay then, you have mine and then tell me its contravertial!!! There are some Doctors that actually have the condition (i've found one or two surfing the net). Dr Charles Shepherd (Ithink thats his name) has it and has written a book about it and how to help with all aspects of life that it touches (got 2 copies). He's attached to the M.E. Association.

Pain relief - I take 150mg of Lyrica morning and evening to lessen the pain overnight and help me get uop in the morning. I find this also helps with broken sleep patterns. Through the day I take 30mg of codeine x2 every 4 hours. This doesn't get rid of the pain but does lessen it a bit.

Rambling over. Hope this helps.

[emilyt]

Hi there Urban Spirit,
So sorry you suffer with M.E. My sister suffers with M.E and i suffer with fibromyalgia. I am actually beginning to wonder if there may be a genetic connection.
Thankyou for the personal info you have told me about your medication.I seem to take a lot but nothing works.
The rheumatologist i saw recently wants me to go for cognitive therapy. I am unsure wether i should go. I know anything is worth trying. I just don't understand how this will help. When i first started suffering i was working part time, looking after my children and had a happy home life. I haven't suffered any viruses. I do try to just get on with life and still do things even if it causes me pain. I was told to push myself harder and i would gradually get better. He also asked if i drank and if i went to night clubs. A very strange question i thought. I reminded him that as i was in so much pain i didn't socialise as such and if i went to night clubs i could go to work. I don't drink alchol . Just don't like it.He said it was a relaxant. Must admit i wasn't very impressed but maybe it is just me. He wants me to take anti-depressants. I said no thankyou. They don't seem to understand that i don't feel depressed just get down because of my condition.
Sorry go on so much but it is so good to be able to share my thoughts and experiences with everyone else.
A big thankyou to Ted-Hutchinson for all the info supplied.
Big ((((((( ((hugs )))))))) to everyone.

[urban spirit]

Hi emilyt http://i60.photobucket.com/albums/h26/w8termelon/hug2.gif

Thats what MSE is all about. Aside from moneysaving, MSE is such a supporting community you can come and outpour as much as you need. The good thing is, everyone who's posted on ths thread (and probably a few lurkers too) understand - lots!

If your GP is offering you a small dose of antidepressants, they sometimes use this to help with pain relief. If its normal doses than its usually to treat depression etc. I keep getting told i'm depressed about my condition too - no, i'm p**sed off with having it which is a completely natural reaction thank you!!!

I sometimes use alcohol to deaden the pain. If i'm having a day when i'm totally fed up with the pain, i'll have a few glasses of red wine to relax and deaden my bod. The flip side is my bod reacts differently to alcohol now - it feels like poison, but I ignore that as much as I can to get some pain relief.

Dont know how congnitive therapy can help - thinking differently about pain?? I'm sure you do this every day to get through the day, and we're all doing the same. I went to a pain clinic for a week.....hmmmm.......i'm usually a happy, upbeat person and this supposed to reduce pain - allegedly - hmmm..........

I'm so pleased you stated this thread, I was wanting to start a thread like this for ages but, I guess, was worried at the reaction of people. And I guess that comes from colleagues and alleged friends reacting badly to my condition.

Come and talk anytime emilyt, and apologies if i'm posting loads and hi-jacking your thread - not meant to!

Any lurkers with similar experiences please come and chat to us.http://img.moneysavingexpert.com/icons/icon7.gif

(p.s. I'm meditating tonight for summer solstice and you'll all be in my thoughts)

Anyone with a foggy head, research found a reduction in....something! Sorry, foggy head! Grey Matter (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15955487&query_hl=18&itool=pubmed_docsum)