i-chica
 

:)I just want to :Thanx: for taking the time to share with us, I appreciate all the info you have posted, I look forward to your next posting:You-Rock:

tender point analysis eliminated, not trigger point.
 

MRSD:

nice post.

one modification. If I remember right, it is the tender point analysis that is going to be eliminated as a requirement for FMS, not trigger point.

there is a nice summary of the recent Dr. Clauw talk at the "Phoenix Rising" site -- on its front page (although it does not mention anything about tender points or trigger points). I am a new member -- so I cannot post the Web address... just Google it and you'll find the article.

///////////////////

Dr. Clauw discussed the "tender" (I thought he said trigger).
My mistake. I went back to the syllabus given us at that conference, and it is tender point. I'll correct my previous post.

Googling Dr. Clauw will bring up many new interviews I assume. He is a very good resource and his lecture was the best that day IMO.

Thanks for the heads up.

P.S. that conference which is held every spring is TEN hours LONG...all in one day. It is tough sitting thru it all! (especially with arthritis in my spine!)

Thank you for your interesting post
 

Hope this post isn't too long, but since I have improved so much over the years I had to explain how. In my 40's I felt like 90, but now at 60 feel more like 50. Still can't work full time, but do work a demanding job 28 hours a week.
I have had fibro since 1985 and was diagnosed around 15 years later. My most prominent symptoms have been fatigue and severe muscle pain and stiffness which progressed to significant fibro fog over the years. Was finally diagnosed with clinical hypothyroidism (slow deep tendon reflexes, edema, etc) with almost normal thyroid blood tests and was referred by my endocrinologist to a book "from fatigued to fantastic" 2007 by Jacob Teitelbaum, M.D He discusses the links between CFS and FM and the role of mitochrondria. I have been on his recommended supplements: acetyl carnitine, alpha lipoic acid, CoQ10 (now on ubiquonone) with the addition of ginger since 2000 and after about 4 years, the rhuematologist that I saw was most impressed at how much the tender points had improved! I used Ribose for about 6 months, but did not see much change. I was an athlete but with children and work had been rather remiss about regular physical exercise. I started walking - in the beginning could walk about 1/4 mile before getting too tired and am now at the point where I can climb a bit in the White Mts! I try to walk about 7 miles a week. This is limited by work as much as fatigue. I no longer take any pain medicine on a regular basis.

Also was diagnosed with Vitamin D deficiency (below 20) and with supplementation 5000 IU a day am now in the mid range.
Recently diagnosed with primary hypersomnia (a form of excessive daytime sleepiness) and take Nuvigil for this. Possible that the fog was from the hypersomnia and not fibro.

Summary: Fibro rx: alpha lipoic acid, acetyl carnitine, ubiquinone, ginger

Thyroid: armour thyroid
Vitamin D
General: Omega 3 fatty acids, Exercise and adequate sleep.
Pain at night definitely makes the fibro pain worse which ends up in a vicious cycle.

P.S. U.S.A. research seems to focus on pain, but other research abroad has done interesting work on mitochondria which can only use Ribose for energy. For some reason, people with fibro the mitochondria may have switched from the normal aerobic metabolic paths to anaerobic paths which results in a build up of lactic acid which then gives muscle pain.

"the links between CFS and FM and the role of mitochrondria. I have been on his recommended supplements: acetyl carnitine, alpha lipoic acid, CoQ10 (now on ubiquonone) with the addition of ginger since 2000 and after about 4 years, "

4 years? hum i started all those in the fall.. i did so much research last fall and i totally think it has to do with the mitochondria and lactic acid..

with me i do not eat enough. i need to fuel my body so it can work properly. i will start the acetyl carnitine, alpha lipoic acid, CoQ10 again.
I take D because i was at 30 in Nov.
extra calcium because i am pre osteoporosis... osteopenia? i am 50 y.o.

started virgin coconut oil in my smoothies.. thanks i feel hope!

why painrelievers may not work for Fibro:
 

http://www.med.umich.edu/opm/newspag...bromyalgia.htm

and another good link:

http://www.med.umich.edu/opm/newspage/2007/hmfibro.htm

These links may be archived soon, so take a look at them now.
It appears that U of Mich takes them down after some time elapses.

NEW: Blood test for Fibromyalgia:
 

This was posted today on the PD forum here.

http://www.imperialvalleynews.com/in...romyalgia.html

It explains a new blood test (fairly expensive) to identify a
specific immune factor in the blood that is involved with Fibro.

Overwhelmed and wow
 

I just joined this site and I am so thankful I did. Even just reading everyone's posts made me feel I'm not alone. I really get the "i'm 40 but feel like 90". I don't want to feel this way anymore. I have chronic headaches... tension I guess the most but leads to migraines. I'm suppose to see a neurologist in July at Vanderbilt and I guess go from there. I would love input from you all as to which direction to go. I just came off Paxil because I just took it while in Nursing School and all the stress with it. But all the pain is still there, from head to my toes. My shoulder blades and neck are unbearable at times. I can take a lot of pain but its to the point where I'm grouchy and I don't do things like I use to do. I've been taking Valium and Fioricet® (Butalbital, Acetaminophen, and Caffeine) and that can give me some relief for a very short while. I've taken Amitriptyline but those class of drugs make my ears ring very loud, so we stopped those in hopes of something else. I started Lyrica last night, 75mg and woke up this morning very dizzy. And I read on here about people taking 600mg a day. How does one function? Right now I'm tired, hurting and can't even think what to do next. Being in nursing.. I sure can't go around dizzy. The valium etc does not make me sleepy at all so I have no problems taking it and functioning. But I just live with the pain until I break and cannot bear it anymore. sigh... like I said... i'm just overwhelmed, hurting all over, and I don't know what to do as the drugs that are for Fibro seem to give me side effects I can't live with either. Any thoughts are appreciated so much!

New article on possible CAUSE of Fibromyalgia!
 

This is very interesting:

http://psychcentral.com/news/2013/06...gia/56233.html

nerves around certain blood vessels, which may malfunction and
actually cause Fibro.

Here is another new paper on Fibro and its associated pain state:

http://psychcentral.com/news/2013/11...ays/61672.html

Question: does fibro cause spasticity-severe enough to cause a 12 degree bend in the knee joint?
I was dxd with fibro in the mid 80s and have had few flares in the past decade. I was dxd with MS in late 08 after a few years of increasing sxs.

I had knee replacement surgery 8 weeks ago…the narcotics worked on the pain from spasms and the surgical site, but then I had a severe flare of fibro that continues to this day; I also had a flareup of MS sxs.
The narcotics did nothing for the fibro pain. I discontinued the narcotics several weeks ago, and my joints and muscles are feeling that old familiar ripping feeling of fibro.

Just wondering if the spasms are from MS or from fibro...

Fibromyalgia Connection to Small Fiber Neuropathy? Really Need Answers.
 

I realize I am on an old thread but wanted to see if there was any mention of the relationship between FMS and Small Fiber Neuropathy. I have SFN and was dx'ed about a year ago. I now have pain all over and won't go into that. I'm posting here(though I could not find the "New Thread" anywhere and I am a member)because I have recently read that there have been some small studies done on people with FMS and SFN showing that a quite a few also have SFN! Since my dx of SFN, my pain has increased, intensified and spread. I am now wondering if the SFN caused the fibro? Can anyone help me? I have been looking all over this site for more information about SFN, how to treat it, IF my symptoms are fibro and not SFN or a combination of the two. I am really searching for answers and cannot find any because SFN is pretty rare and most drs know very little about it.

Well--
 

--small fiber neuropathy is hardly rare; it is the most common type of neuropathy from diabetes and a large majority of "idiopathic" neuropathy sufferers have predominantly small-fiber involvement.

There well may be a link between small fiber neuropathy and fibromyalgia--but a lot of that would depend on what one's criteria for fibromyalgia are (a subject that is still in considerable dispute among doctors and researchers).

Small fiber neuropathy, by definition, involves the small, unmyelinated nerves that subsume the sensory sensations of pain and temperature, and also most autonomic functions. There is no muscle involvement with small fiber neuropathy, as it is the larger, myelinated nerves that ennervate muscle. However, some think that muscle knots or trigger points can tighten and compress small fiber nerves that pass nearby them, leading to neural symptoms.

The muscle involvement reported with fibromyalgia (myo means "muscle") makes it unlikely that small fiber dysfunction is the primary or only mechanism involved in the condition. It is likely multifactorial and would certainly involve larger, myelinated nerves as well.

Good News
 

I am glad to hear there is a Dr. at U of M who has the latest information on Fibromyalgia. I was diagnosed in 2011 by a Rheumatologist after several years of going to a GP. I have tried almost every drug on the planet, and have either had an allergic reaction or it didn't work. I'm currently seeing a pain management doctor who prescribed Ketamine Infusions, PSTIM and Suboxone. I am so confused. I live close to U of M, so will try to get an appointment with Dr. Clauw. Thanks for the info!

Hello! I'm sorry you are having tremors. I have had FM for likely 20+ years, been on every med, allergic to most of them or ineffective, and also attended pain management for a month in early 2000s (was worth it at the time, but I'm far worse now with other issues). I have internal tremors as part of my small fiber neuropathy with TS-HDS antibody - a condition that validates FM. I also have Paroxysmal Hemidystonia - a movement disorder. Have you seen a movement disorder neurologist? They deal with tremor issues such as Parkinson's and dystonia, etc. Might be worth a shot. It took me about 10 neurologist and neurosurgeons to get to this doctor and only after I researched many medical journals and shared ideas with my doc. Be your own advocate! Good luck.

Hello! I have had FM for 20+ years and was diagnosed this year with Small Fiber Neuropathy (SFN) with TS-HDS antibody (and many more issues). I was tested three times between Neurology and Rheumatoid Arthritis doctor for Lyme disease and it was negative. However, I did test positive for Rocky Mountain Spotted Fever (took 10 days of Doxycycline and supposedly it's gone...) and Alpha Galactose (red meat allergy) - both from tick bites, and likely from years ago when I did more camping. The SFN was validated by a biopsy from my lower and upper leg. It also gave extra validation to my FM. Is it possible you can discuss these other tests with your Neuro?

Also, I changed chiropractors on advice of my orthopedic specialist to a chiropractor who tests and reactivates the muscles that don't want to work properly - for me these are my glutes and lats. I also attend physical therapy there. I learn simple exercises to help me keep up or reactivate muscles and just recently added strengthening. This could mean doing only 5-10 reps because exercise exacerbates other conditions I have. I love a massage even if it's just all about an hour of relaxation. I call it my reset switch! Be your own advocate! Best of luck!

I'm so sorry for your pain. I've had crazy headaches since I was 8 years old that have progressed to Hemicrania Continua. I'm not a doctor, but not sure what your headache symptoms are. Migraines, continuous headaches or changing headache patterns? I don't have much luck with medications. My neurologists are trying to get creative with me because I've tried just about everything with no luck, bad side effects or I'm allergic. However, some meds take time to adjust to and require ramp-up.

I've been the medicine guinea pig for years. I feel your pain! It's hard to find the perfect "cocktail" for relief. One medicine I've tried with some success for general pain is Low Dose Naltrexone from a local compounding pharmacy. In larger doses, the med is used to treat drug addiction. However, Neurologists and Rheumatologists are using this medication at low doses for FM/neuropathy/arthritic pain. I was ramped up every 30 days from 1mg to 2mg to 3 mg to 4.5 mg.

For onset of my headaches, I use Ketamin nose spray (also from a compound pharmacy), Clonazepam orally disintegrating tablet 0.25 mg and Carbamazepine (Tegretol), 100 mg tab chew. The ketamin burns, so I swab with a gel I was also prescribed prior to use. This is the first time I've been given this combination and it works about 50% of the time. The key is getting the meds in upon first symptoms. Mine just come on very quickly.

I wish you the best of luck.
Be your own advocate!

The medication section
 

I found it interesting that he didn’t recommend opioids but also said that tramadol had a moderate success. Tramadol is an opioid.