Fibromyalgia

shokadelika

Is Fibromyalgia Just a Vitamin D Deficiency?

From https://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

nearlyrich wrote:

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[SIZE=-1] nonspecific musculoskeletal pain[/SIZE] ...[SIZE=-1]GREGORY A. PLOTNIKOFF, MD, MTS, AND JOANNA M. QUIGLEY, BA showing the amount of vitamin D insufficiency in people with pain.

and this paper [/SIZE]Vitamin D Deficiency: What a Pain It Is MICHAEL F. HOLICK, MD
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.

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

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

urban_spirit wrote:

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.
[FONT=arial,helvetica]Time to put the exercise cure to rest ?[/FONT][FONT=arial,helvetica]
[/FONT]Is Graded Exercise Safe for People with M.E.?

If instead of proceeding with the polio vaccine route we had followed the treatment regime 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.
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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