Fibromyalgia

[talyn777]

Yardbird,

from your description, it doesn't sound like she has fibro, at least not classic or severe, but more likely a kind of arthritis, perhaps coupled with a damaged disc causing some neural pain problems on her skin. Sometimes my right arm gets scalded spots and my left arm gets a numb patch. We believe those to be the result of a damaged disc pressing on the nerves that lead out to the arms.

I am not a medical professional, but I do have experince in several types of pain problems.

If you think it might be FMS or want to learn more, there is a TON of info out there. I would google it and check out a few of the websites that are specifically targeted for this syndrome.

It is one of a family of syndromes all characterized by strange hyperalgia (extra perceived pain or extra sensitivity to pain).
The main indicator for FMS is a set of 18 specific places that almost ALL FMS patients have at least 11 of. These are tender points; specifically it hurts if you press right on the node of pain, but not around it. In the middle of the back, just under the edge of the shoulder blades are two typical spots, one on each side. Many websites have a map of tender points.

There are people that believe it is caused by various deficiencies and can be resolved by one of several cures, guafenisin is an example. Magnesium difficiency is another. Vitamin D shortages is another. Lately there is a lot of attention on dopamine deficiency.

There is a pretty good case for this as the problem is often accompanied by chronic fatigue and depression. Especially the ups and downs kind. OK-not-too-bad one day and terrible the next. There are a lot of things that can cause enzymic difficiencies, but one thing is clear. Not getting good sleep and enough sleep makes a LOT of things worse. Stress, bad stress, tends to make almost everything worse. Not getting good nutritional food and not having good digestion also makes things worse. (or candida/yeast imbalances, some would say). If you get into the vicious cycle of having these things out of balance, they can cause a HUGE number of symptoms.

So I have a few things she can try right away:

Get a blood test by a doctor who understands rheumatology and adrenal stuff. Check thyroid function, including T3 and T4.

See a neurologist.

See a pain specialist, but they are hard to find.

Try not to eat late, between 6 and 7, and have small dinners for about a month. If nothing else, this will probably help you both lose about ten pounds.

Make sleep a high priority and have her partner, YOU, check on her sleep and see if she is having trouble breathing, snoring, fits and starts, etc.
If so, then get her into a sleep study right away. The way I did that was by having my family doctor refer me to a pulmonologist.

If she is under stress, real or perceived, enough that she gets upset a lot, or has symptoms of depression or other mental instabilities, I would have that checked out as well. Some of the anti-depressants and mood stabilizers actually help fibromyalgia symptoms. Like Cymbalta or Welbutrin, and Neurontin or Lyrica, which work on the dopamine system, among other things. And can help with sleep for some people.

country4ever
I have not been tested for Lyme disease in a long time, but I was tested once. Legionnairres too. NO and yes, but treated. I also had mico-plasma pnuemonia in college. I have disc problems, four in my neck, one BAD one in my lower back.

I NEVER touch aspartame, not even to throw it out if I can help it. Can't stand the taste and it gives me headaches. I don't think it should have passed the FDA testing. I'm not a big fan of Splenda either, but it doesn't seem to be nearly as suspect for health problems.

Good luck and I hope she figures it out.
No one should have to be in unecessary pain.

Talyn

[frapilu]

I've just recently gotten a preliminary bloodwork diagnosis for a weird, rare autoimmune arthritis condition called CREST, a subtype of scleroderma. What caused us to test the autoimmune was the terrible pain I've been having in both my wrists and hands in the night and a long time in the morning. I'm being referred to the Arthritis Centre at a hospital near home & work. The webpage for the centre says that "This clinic is dedicated to the treatment of rheumatological disorders, osteoporosis, arthritis and fibromyalgia". Since this hand/wrist stuff has popped up last fall, I've also had more trouble than ever sleeping, especially staying asleep, and my whole body pain levels have dramatically shot up.

Back in 2003, I was convinced that I had FMS so my doctor & I discussed it. At that time, I easily passed the test of having at least 11 of the 18 tender points being in pain but my doctor wasn't convinced. She sent me for a sleep study and we discovered my apnea. With CPAP, the pain improved. Now it's back and I know I'm back to easily having at least 11 of the points again.

I'm waiting to hear when my appointment to the arthritic clinic is and I'm building a list of things to ask, mentioned, etc. I will definitely be asking about FMS because I suspect I have it in addition to this autoimmune thing.

Good to read this thread. I hadn't realized so many of us were in this pain cycle.

Thanks alv for bringing it up.

France

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CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP

[talyn777]

Subutex is a very powerful analgesic, like Oxycontin, but it doesn't have a sharp withdrawal curve. You can take it in stead of the oxycontin and you won't have withdrawals. It is a perfect replacement. Then you taper off the suboxone, which is much easier to do. Not as easy as they say, but not too bad until you get to the last step. They also use subutex for many other narcotic addictions and also tramdol addictions, not that you can be addicted to Ultram / Tramadol, but a lot of people seem to think that they are. <smile> Subutex is the actual drug, but suboxone is the drug they give you. It has Narcan (naloxone) in it to prevent people from abusing it (shooting up), so you have to take it sublingual. Bitter is all I have to say about that.

I hope this helps. There is a lot of web info on it.

Joy,

talyn

[Country4ever]

Funny thing, when I first went to a rheumatologist with all this pain, about 12 years ago.......she would press all over on me and say "does this hurt?" I would say "Well, it hurts 'cause you're pressing on it!" I had a very hard time knowing what she meant. I finally had a physical therapist who found one spot on me that didn't hurt......and she said "That's how ALL of you should feel". Then I realized that most of me hurt! I had become so used to the pain, that I didn't realize that it hurt when the doc pressed on me. It was no different than it had been for years!

I think they're going to discover that there's probably a bunch of things that lead to the symptoms of fibro. I think once certain damage has been done in certain areas, or certain deficiencies have gone on too long (including sleep), that we all have a very similar profile as far as symptoms.

Last fall, my leg starting aching soooooooo bad. I thought it was from an arthritic knee. I had an MRI, and it wasn't my back. I had PT, which didn't really help it. It was awful pain. It finally eased up after about 4-5 months. But this is how things go for me with fibro. One day I can be fine, and the next I have some bizarre problem. I've tried to learn to not run to the docs everytime something happens.........but its hard not too.
I believe that "hyper pain perception" theory. But that sure doesn't help to endure it!
There are so many possibilities. I wonder about Epstein-Barr or some other virus.
Its very encouraging to be seeing ads requesting patients for fibromyalgia studies. Its been a long time coming.
Like they say, its difficult because we "look so good". But its a very difficult life with all this pain, fatigue, and all the other problems that seem to go along with it (IBS, memory problems, depression).
Sometimes I wonder if its just what happens to the human body when it can't keep up with the modern world and all its craziness.

[jskinner]

The only problem with high doses of magnesium is that it can cause diarrhea.

I think if you take Magnesium Glycinate instead you can avoid some/all of this side effect?

[sharon1965]

i need to look into it further, my chiro was out of stock...i'll update when i find out if it's what you're referring to, james

[alv7722]

Another characteristic of fibro is that analgesics don't seem to help a lot. If they do, it is usually only for a very limited duration.

Al V

[talyn777]

yep neurological pain doesn't follow the same rules as other forms of pain. Normal analgesics can make you feel better all over (euphoria) and help out with the secondary pain from tensing up, muscle spasms, etc., but the primary pain is between your ears. Not that it doesn't hurt just as much, but it's a different mechanism. They did find that people with fibro have greatly elevated levels of a substance "P" which is indicative of being in pain.

There are problems with employers too. Once they realize that you say that you hurt, but there's no injury. That you are tired and in a "fog", but don't have a virus or bacterial infection. Then they run out of sympathy real fast. Especially when you fall asleep at your desk on a regular basis because of sleep dep.

One of the best analogies that I have heard, and it may actually be medically related, is phantom limb pain, where someone has lost a hand or foot, but it still hurts or itches etc. We know that it can't actually be hurting because it isn't there. There are no nerves there to send pain signals. Nevertheless someone with phantom limb pain (PLP) will tell you it is all too real.

As an aside, one of the stranger treatments for PLP is to hypnotize the patient. Then they set up a mirror so the person see's the hand as the other hand (or foot or whatever), then they treat the surrogate while the patient watches, perhaps a massage with an analgesic cream or cortizone shots probably placebo-saline. They have had success with this. The mind believes that things feel better and the ghost pain goes away. Psychosomatic release.

I have also experienced that normal pains, such as due to an injury etc., seem to hurt more and continue to hurt longer than "normal", so I take analgesics for those kinds of pain. There is a mechanism that causes a particular pain to stop hollerin. Reset the alarm. But in some people and most young children, this doesn't work well and they keep hurting.

Pain is so nebulous that even loved ones occasionally look sideways at you as if to see if you are "faking it" or exagerating to get sympathy or out of work etc. No one but YOU knows how bad the perceived pain is. It would be really good if pain showed up on an MRI or something. Then people would have something besides your word to help them believe.

Some drugs work on different pain pathways and may help more than others. I still encourage people with fibro to try different meds to see what may work for them, but I caution against high levels of narcotics. I learned the hard way that they actually seem to stimulate hyperalgia. You take the pain killer, then pain level increases til it gets heard, you take more pain killer, rinse and repeat til you hit the limit of what they will prescribe and then you have an addiction or physical dependency to add to the heap of your problems. Also high levels of pain killer can mask real injuries and affect your judgement.

Take care,

Talyn

PS: Has anyone noticed that the Spellcheck feature doesn't seem to work OR am I doing something wrong. I intentionally misspelled something and it didn't catch it.

[Lee Lee]

Yes, spell check is broken.
Just a note: I am taking massive doses of Vitamin D, due to a serious deficiency discovered on blood tests last year.
My fibromyalgia symptoms are better. Not gone, but much, much better.
Lee Lee

[Country4ever]

Thanks for sharing all that great information you have Talyn. I'm sorry its all from personal experience though!

I'm afraid to have any type of surgery now, since I know my body will totally over-react to it.
I had a horrific time after a simple knee meniscus repair. Fortunately, the doctor knew all about fibromayalgia, and he was very supportive.
Unfortunately though, even though my physical therapist was extremely knowledgeable in her field, she knew nothing about fibro and I got the feeling she didn't really want to know.
I was 100% compliant with my daily exercises, and went to all of my PT appointments. But one day (rainy out), I was stiff as a board and having all sorts of pain. I tried to explain to her that this is how fibro works, and our muscles react differently than "normal" people's do. But I could tell by the look on her face, what she believed was that I was slacking off. It was very frustrating.
Hopefully, by the end of my PT experience, she was more aware of FMS and hopefully understood it better.
You're example about the phantom limb pain........I hope people don't think that because that treatment works, that its "all in one's head". (Well, it sort of is, but not in the traditional way of thinking).
Also, I hope people don't assume that because something DOES work because of using imagery, etc., that the initial problem is all in our heads too.
We need more mind-body-spirit communication in everything we do.
Thanks again for all your info.

[alv7722]

Many with fibro are shipped off to a pxychiatrist. this doesn't work either. If your body is missing something necessary to function, all the "attitude" in the world will not fix it. If you are wounded and your blood drains out, you will die. No amount of positive thinking will prevent it.
Once again, if its fibro, the dopamine agonists help it, or in my case cure it. My problem (I believe) is the weight gain from the lethargy from the fibro, probably contributed to getting the severe OSA. Many of the symptoms are very similar, so at first I thought I had relapsed and the Mirapex was not helping. Stopping the Mirapex for a few days proved that idea very wrong!

Al V

[talyn777]

Thank you. Re-reading my post, I see that it could look like I'm saying that fibro is just a psychological problem. Definitely not. In fact, the dopamine connection looks promising. But our mind-body connection definitely affects the levels of our psycho-enzymic-endocrine-whatsit systems. Seratonin levels, norepenephrine levels, dopamine levels. If you think about eating some delicious cherry pie, you start salivating. The mind often can't tell the difference between real and imagined.

Perhaps it would be better if I also made the analogy to arthritis which is a disease of the body not being its own best friend. Auto-immune problems where the body is literally trying to destroy and expel important bits, not just the bad stuff. Sometimes swelling helps, sometimes a fever helps, sometimes pain helps, but sometimes we want to stop the bodies automatic responses and sometimes they go haywire and jump the tracks. "I think I can" and "there's no place like home" and chanting "Ohmmmmmm" will not get rid of arthritis.

I was just pointing out that sometimes hypnosis, meditation and visualization can be an important adjuct to treatment. They especially help you get the most out of your placebo effect. <smile>

Take care,

Talyn

[alv7722]

Right on. Many of the calming techniques definitely help in the long term. Essentially anything you can do to stop depleting the adrenaline reserves is going to be helpful. A HUGE help is getting a good nights sleep on a regular basis!
Thats where this forum has been a great help.

Al V

[Country4ever]

Oh no, Talyn, I wasn't saying that YOU were saying it was all in the mind........I'm afraid that's what "non-believers" might say.
I have these cyclical episodes of everything getting awful, then it gets better for a month or two.....then awful again. I wish I could figure out what triggers it. In my case, I'm thinking my gut definitely is involved. I'm tending to believe in Leaky Gut.
I'm going through a bad sleep spell now. Sure wish I could get it right. The rest of my family can sleep 12 hours solid.....but me, I can barely make it to 5-6. For some reason all this equipment on my head is driving me crazy.

[sharon1965]

They did find that people with fibro have greatly elevated levels of a substance "P" which is indicative of being in pain.

substance 'p' is a neurotransmitter which carries pain signals to the brain...these elevated levels that fms patients have are the reason we perceive pain where others may only perceive pressure, and why things that cause pain in a so-called normal person--ie, barking one's shin, stubbing one's toe--cause fms patients much higher and longer lasting pain reactions

capsaicin cream, while effective as an analgesic, if used as directed will also deplete the substance "p" from specific areas...if you are like me and suffer from global pain (tolerable) but also very severe pain in certain areas (for me it's my shoulders and hips), this cream really works...it's great for arthritis, too...just don't take a bath or shower too soon after applying it...i've inadvertently done this, and actually felt like my skin was on fire!

i've also read that massage is the best thing for fms patients, when stacked up against other available 'treatments'...haven't tried it yet, heck, the last thing we fms people want is someone pressing and kneading on us when we can barely tolerate a hug, but i've finally booked an appointment with a registered massage therapist who is trained in fms massage