Fibromyalgia Information and Advice

[Aigeann]

Greetings, sphericaladdy, and welcome to the Board and the H&H section.

Valerian is widely available and in pill form here, too. My husband swears by it when it can't sleep.

Blessings, Aigeann

[sphericaladdy]

Thank you for the warm welcome!

[raveighen]

I want to thank everyone for their posts. This has been enlightening, informative and comforting in a sick kind of way to know that there are others out there suffering the same problems. I have to say the pain I can deal with but the chronic fatique is what hurts me the most. I have young children and I feel I'm not being a decent mother to them, I'm just too tired to do anything. But, enough about me, I just wanted to say thank you.

Raveighen

[owl*light]

It doesn't surprise me that many painkillers don't help FM sufferers. I have FM, and with that I have MCS (multiple chemical sensitivities), I couldn't take a painkiller even if it did work. A doctor here in Melbourne discovered the link between FM and bacteria in the body. My doctor who is also a naturopath, had me tested for 9 fairly rare bacterial diseases. Unbelievably I came back positive to 7 of them. The most detrimental to my body was Q-fever, which had apparently been rampant in my system for many years. My immune system was so stuffed that it hadn't even bothered to fight it, I didn't have any detectable anti-bodies. I was red flagged by the department of health when they saw I had no antibodies, assuming I had only just caught it, they wanted to know where the outbreak was. Q-fever is normally associated with abattoir workers, but unfortunately for me, it can become air borne, and a number of years ago I had to drive past an abattoir everyday on my way to work. So now on top of FM, CFS, MCS, I have QFS, which is Q-fever fatigue syndrome, even more debilitating than CFS

So the bacteria in the body also makes the FM sufferer photosensitive, some of you may notice you get tired or drained in sunlight, well apparently the sunlight is what feeds the bacteria and in turn worsens the FM symptoms. The only treatment I know of, and refuse to take, is the Marshall Protocol ( www.marshallprotocol.com ), which involves 3 years of antibiotics and hiding from all forms of light. The body gets so overly photosensitive whilst taking the antibiotics, that exposure to sunlight can kill some individuals as the body goes into shock. As an FM sufferer, the last thing I know I need is more stress lol.

I'm sorry that many of you also have FM, but it is nice to meet others who know what you are going through. I have taken on the flower 'The Forget Me Not' as my only little plant totem, as I find many of us who suffer from FM, ME, CFS, MCS, Lupis, etc are the forgotten people. Many of our symptoms are not external, so people can't see what is wrong with us, sometimes I wish that I had a cast on my arm just to externalise a sample of my pain to the world. I can no longer work, and I've lost most of my friends because they can't or won't understand why I can't visit them, go out, or have them visit me at times. How do you convey to someone that you can't get out of bed because it feels like you are being crushed in a full body vice, not many people could even fathom that?

But enough whinging from me! I'm having faith in the inherent power of my mind and the gentle blessings of the universe

[raveighen]

<hug>

[Twig]

An interesting twist:

http://cfsfm.org/index.php?option=com_c ... temid=2380

It's been quite a journey to read all of the posts on this thread, from its inception until lately.... I'd have to say we're all pretty amazing.

[LadyCelt]

I've been reading a book about adult ADD (attention deficit disorder) in which the authors comment on an interesting connection that has been found between ADD and FMS. Doctors treating patients for ADD who also happened to have fibro, reported that many patients who took ADD meds reported a marked improvement in their fibro symptoms. Less pain, more energy, etc. However ADD meds have not been approved for the treatment of FMS by itself, at leaslt not in the U.S. that I'm aware of.

How and why this works, I'm not sure, but I thought it was worth noting.

[celtigirl]

Greetings,
I am a new member still waiting for my packet. I was diagnosed with FM about 6 years ago. I do suffer from chemical depression and well as IBS and sleepless nights. I was off the antidepressants for about 4 years and have recently gone back on them. The new Dr. wants to put me on Lyrica but my little voice tells me no.

I moved to Ohio about 4 years ago from California. Big change, especially weather wise. The weather does affect the FM but so does my attitude. I will not let it have control over me, I have the disease it doesn't have me.

The one thing I have not seen discused here is the use of Cannibus. While living in California I used it often for the FM and all the other goodies that goes with it. It helps in many ways and it's natural given to us by The Great Mother. I really think that we are still living in the Dark Ages where Cannibus is concerned. I would much rather trust a weed that I can grow than a chemical produced by who knows who, what or where. It is my body, my house and I should be the only one who says what goes on and in them. I wish I had the freedom to ingest Cannibus the way that some ingest alcohol.

Peace

[Twig]

Welcome, Lady Celt! I've had FM and CFIDS for 24 years, and the way one adjusts to life with poorly understood diseases is a very personal journey. I have learned the "never say never" rule over and over. My ways of coping have changed a lot over the years.

I could not deal with this disease if it were not for cannabis. I don't use it every day, but I do use it when I can find quality weed. If I were busted, I'd probably have to serve jail time! So ridiculous...

I wish you an insightful journey down this path. It has been a real teacher for me.

[Malkin the Muse]

I was diagnosed with fibromyalgia at the age of 23 after doctors told me for years it was 'growing pains'. Needless to say, my consultant handed me a leaflet and shoved me out the door. It wasn't until I saw a neurologist that I was also diagnosed with severe migraines that I was put on 6 monthly procaine hydrochloride infusions, a low toxicity anaesthetic that numbs the nerves. It is used to treat MS, but also helps with the fibro. I find horse riding helps with the pain, maybe becuse of the exercise and the horse's own healing gift. Riding is also good for sciatica too. Apart from the procaine, I have had no help or support from the NHS and was left to fend for myself. And, yes, I do have "toot" when my procaine is due, simply because I have nothing else.

Blessings

[Twig]

Good info, Malkin the Muse. I am in the throes of a bit-time relapse and am having a 2-month long (and counting) headache. It has greatly affected my vision. I have a CFIDS diagnosis in addition to the fibro, so most of the time I don't even seek medical help since so many docs have no clue. However, I am going to inquire about the procaine hydrochloride infusions as that is one thing I haven't tried.

Keep riding, and best of luck to you!

[Busker]

I've been reading a book about adult ADD (attention deficit disorder) in which the authors comment on an interesting connection that has been found between ADD and FMS.

Now that is interesting to me since I am "blessed" with both ADHD and fibro.
If you could recall the title of the book and either post it or PM me I would be in your debt.

[Twig]

Oh, just great, Busker. Maybe your case of ADHD is so mild that it was never diagnosed?

I am too old to have been given a label like ADHD, but my friends gleefully tell me I have it. I do know that I've never been able to deal with mathematics or geometry on any level and had to find a college that would let me takes two sciences instead of one match and one science course in order to be able to graduate. I cannot read a map of any kind. I am constantly getting lost.

Isn't it ironic that I have a disease that requires so much rest, and I will not do it until I absolutely have to; i.e., I am falling down from weakness and pain. A wee bit hyperactive? Hmmm...

I suspect that fibro exacerbates symptoms which could be translated into ADHD. When I am in a relapse, my brain goes on vacation. Personally, I think the basis of all of these "new" immune (and learning) disorders are due to our having consumed agricultural chemicals in our food.

[Busker]

Oh, just great, Busker. Maybe your case of ADHD is so mild that it was never diagnosed?

I was diagnosed at the Maudsley in London In 2002. Ritalin helps when I have to cope with tedious stuff but I don't like it.
I have often wondered if there could be a link because fibromyalgia 'fog' and ADHD do seem to share quite a few characteristics.

[Twig]

Good point. Maybe the same part of the brain in affected?

Does the Ritalin make you feel weird?

[Busker]

Good point. Maybe the same part of the brain in affected?

Maybe or maybe neurotransmitters or something...not that I have a clue what I'm talking about.

Does the Ritalin make you feel weird?

No,it just makes me boringly normal. Yeah,it levels me out and stops me being so crazy,but it also destroys my creativity and spontaneity.

[Twig]

That is a difficult trade-off, then. I guess you wouldn't have to take it if you had some down-time to be crazy and creative...

As for the neurotransmitters, you may be on to something. I used to read everything I could about FM & CFIDS when I was first diagnosed 24 years ago. Now I just wait to read about a cure, knowing one will not come in my lifetime. Hopefully, one will come along for you, Busker. Have you tried trigger p;point injections?

[Huathe]

My ex-wife Cheri has fibromyalgia and my wife Joy may be developing it. Cheri developed it after catching Mono from Sarah, our daughter.

Fibromyalgia is a myterious disease that all doctors do not recognise as a disorder. I have always wondered also why it is so much more common in women than men? I read somewhere that the cause my be environmental. In Cheri's case, a virus.

Over the last three decades some diseases and disorders seem to be getting so much more common. Fibromyalgia was pretty much unknown just two decades ago and now very common. Autism, especially in children was rarely heard of when I was a child and now 1/100 kids are dignosed with it. Cancer is rampant with 1 out of 8 developing it during some point in their lives. Also disorders like ADD and ADHD were rarely heard of, back in the 1970's.

True, some of this apparent increase is probably due to better awareness of the disorders by people and the medical community. But some I believe to be genuine increases. Many believe autism, in some cases to be caused by childhood vaccines though this has yet to be proven. ADD and ADHD is believed to be a neurochemical disorder though many cases may be, at least in the case of HDHD nothing more than just poorly disciplined children. Attitudes on parental discipline are certainly less strict than it was in my youth or my parents youth. Truth is, it is probably is genuine in some cases and just poor discipline in others. Cancer just keeps getting worse. Part of that may be attributed to people living longer, but I feel that alone does not account for such a large increase .

Personally, I feel that hormones put into our food and/or insecticides/herbicides used to grow it plus environmental pollution has a lot to do with the increases in disease we see. I feel this is certainly the case with cancer. humankind just can't keep dumping pollutants into the environment without it coming back on us. Mankind is part of nature, not separated from it. Soil nature and you soil yourself.

And then there are diseases like AIDS that evolved or cross-jumped species back in the 1970's and now 30+ years later still has no cure.

[Dendrias]

ADD and ADHD is believed to be a neurochemical disorder though many cases may be, at least in the case of HDHD nothing more than just poorly disciplined children. Attitudes on parental discipline are certainly less strict than it was in my youth or my parents youth. Truth is, it is probably is genuine in some cases and just poor discipline in others.

Boy, I can tell You!
Rumour has it that the increase of ADD is just the pharma-industry's need to sell pills against ADD. Just after a medication was invented, cases of diagnosed ADD increased. And, for sure, GP had new ball-pen-presents from certain pharma's on their desks. But that's a rumour.

(Although, my GP once gave me a recipe for pills, the name of which I had read about ten minutes before that ... on the post-it-box on his very desk!!! )

I feel this is certainly the case with cancer. humankind just can't keep dumping pollutants into the environment without it coming back on us. Mankind is part of nature, not separated from it. Soil nature and you soil yourself.

Spot on!

[Busker]

ADD and ADHD is believed to be a neurochemical disorder though many cases may be, at least in the case of HDHD nothing more than just poorly disciplined children.

Sadly the waters are far more muddied than that.
There are those who genuinely have the condition and blame it for thier thuggish behaviour.
ADD or ADHD is an explanation,not a ****ing excuse!!
One seldom gets to see,hear or read of the ones who genuinely struggle to do and be the best they can.
Sorry folks,rant over.