Re: Living with undiagnosed illness for 18 years

[Guest guest]

Hi Carl, Have you been checked for a peripheral neuropathy or MS? You should

have had a brain MRI at least, if you haven’t already. I’d also like to

suggest to you my own cure for mouth ulcers- it does sting, but gets rid of

them in 2 days – for me anyway. Just dab them with pure Oil of Oregano. As

to the pain, have you tried taking Curcumin (this is the potent,

standardized extract of the spice Turmeric, but you have to get the 90-95%

capsules at the vitamin store, but it’s not too expensive). This has helped

me with my pain and inflammation, a good thing as I’m allergic to all NSAIDS

and other painkillers. Using a Neti pot to irrigate one’s sinuses with salt

water is very, very effective preventive/curative for sinus infections and

issues.

I’m suggesting these alternative supports I have discovered, that work for

me, because it’s obvious you have not received the proper medical attention

at all. I wish I could suggest a doc for you, and I hope someone else will.

Good Luck Carl. TC, Aylwin xox

[Guest guest]

I'm sorry to say that I don't have a doctor to recommend; however, I

have had some luck with isolating the problem areas for diagnosis and

treatment of disorders that I experience IN ADDITION to fibromyalgia.

I also had problems with electric shock sensations in all 4

extremities. I had the good luck (!) of breaking my ankle, which

brought me to a great orthopedic doctor. I knew that I had back

pain, and he sent me to diagnostics which showed that I had disk and

joint degeneration in L4-5, L5-S1 areas (as well as another area, the

name of which eludes me at this moment). This caused the electric

shock sensation in my feet, and treatment with lidocaine patches,

antiseizure medications and opiod medication as well as NSAIDs helps

keep the pain manageable for me at this time. Surgery is not an

option for me. I completed injections several rounds of spinal

injections of corticoids without improvement.

I also had pain in my right shoulder, and after diagnostics he found

that I have a disorder called Impingement syndrome in which the

rotator cuff tendon rubs against the roof of the shoulder, the

acromium, causing tears in the tendons or muscles. Surgery included

grinding the bone to make more room for the muscles and tendons to

move more freely. Upon healing the electric shock sensations in my

hand and elbow were completely gone -- I'll probably have the left

shoulder done at some point.

I have had irritable bowl syndrome since I was a teenager (over 30

years) = as it turns out, I also have an irregularity in the way my

colon is laid out in my abdomen which may contribute to this

disorder. I have had a problem with my heart racing, migraine

headaches, heart palpitations, dizziness and lightheadedness; as it

turns out I have mitral valve prolapse with regurgitation, which is

probably responsible for several if not all of these symptoms.

Who would have thought that one person could have all of these, and

still have symptoms which are still attributed to fibro and/or

chronic fatigue?

As others have written, just because you have fibro, CF, ME, ...

doesn't mean that you shouldn't be tested for other disorders.

Good luck with your treatment! Laurie

[Guest guest]

Carl,

Wow, I have to say when I read your post it sounded oh so familiar. I

thought that everyone just had this stuff going on all the time...or

that I was just a real whiner. Much of my life I have been able to

push through a lot of this (though I am paying for that now!). The

mouth sores and other symptoms you talked about sound so familiar! The

electric shocks in the hands & fingers...have been there too!

My hands are still the worst. Some days better than others, however. I

found that I have MPS (myofascial pain syndrome), FM, Pernicious

Anemia, seritonin deficiency syndrome, etc. The fatigue is still

almost too much to bear sometimes, but it is getting better. Pain

comes mostly in flares now, not always constant pain (except for hands).

I have been tested for lupus, RA, and all sorts of other stuff. I have

even had an angiogram for chest pain (I now know to be MPS/FM related

pain). I also have hypothyroidism that was subclinical for years.

A book I have found most helpful is Fibromyalgia & Chronic Myofascial

Pain Syndrome, A Survival Manual by Devin Starlanyl (a doctor who also

has FM). She also has a website: http://www.sover.net/~devstar/

I live in Oregon and have worked with two doctors that have helped me

immensely, both in Portland, Or: Dr. Harold Gandler (rhuemotologist)

and Dr. Kim Webster (functional medicine specialist). It might be

helpful for you to seek out a Dr who specializes in functional

medicine (a combination of traditional and natural medicine).

Hope some of that helps.

Best of luck to you!

DonnaL