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Topic: Fyber Myalgia and Clusters (Read 989 times) |
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ThisHurts
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Fyber Myalgia and Clusters
« on: Jan 9th, 2003, 9:43pm » |
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I was just curious, as I am very new to this group if anyone out here also has Fyber Myalgia or has looked at that as a possibility? My main problem is that I have FM and I was just diagnosed with CH. I was put on Lithium and Pregnason for the CH, but the problem is each one is known to cause problems with people who suffer from FM. Anyone have any ideas or thoughts? Thanks in advance!
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2late
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Re: Fyber Myalgia and Clusters
« Reply #1 on: Jan 9th, 2003, 9:50pm » |
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welcome to the board, i'm sorry to say i haven't heard of that but i'm sure someone will know, stay tuned. ........2late
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nancyc
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Re: Fyber Myalgia and Clusters
« Reply #2 on: Jan 9th, 2003, 9:54pm » |
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Fibramyalgia? nope, i dont have it...but have heard it is pretty bad....have a cousin who has it. smiles, nancyc
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Elizabeth
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Re: Fyber Myalgia and Clusters
« Reply #3 on: Jan 9th, 2003, 9:55pm » |
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they actually thought my clusters were due to fybromyalgia.... maybe it's worth it to check into it again to see if your first diagnosis was correct. Many of us have been through numerous diagnoses.
Lizzie
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cootie
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Re: Fyber Myalgia and Clusters
« Reply #4 on: Jan 9th, 2003, 11:08pm » |
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Here's an interestin advertsiement and some info about FM.....I 'hope' this link works....I am doin sumthn wrong I think with links...I dunno....maybe I did it rite this time.....Pam
http://www.sunlightsaunas.com/fibro_what.htm
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firebrix
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Re: Fyber Myalgia and Clusters
« Reply #5 on: Jan 10th, 2003, 1:09am » |
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I don't think I can help much but as Elizabeth mentioned, CH is often misdiagnosed as Fybromyalgia. There's a chance that this is true in your case. Have you seen a neuro yet?
Welcome
PFDAN to you
firebrix
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ThisHurts
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Re: Fyber Myalgia and Clusters
« Reply #6 on: Jan 10th, 2003, 9:23am » |
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I did see my neuro, and it is currently understood as both being seperate based on the way each are presenting. My FM is kept in check with a drug called Ultram aka Tramadol. It is a minor pain killer listed below Tylennol 3 with codine. I take the Ultram as needed for body aches. The CH's aren't even touched by the Ultram and present in totally different ways as you all know.
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Bob P
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Re: Fyber Myalgia and Clusters
« Reply #7 on: Jan 10th, 2003, 9:56am » |
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Here's a little something a Rocky sent me in an e-mail long ago:
The Remyelinization Process In Retrospect
By Robert G. "Rocky" Frie
www.aliendecor.com/neuralgia/headachelog.html
June 2002 I am very pleased to report that through extremely painful and relentless experimentation on myself since 1998, I am almost 100% pain free nearly 100% of the time, 365 days a year with infrequent slight momentary dull residual discomfort of my Trigeminal Neuralgia / Cluster Headache ordeal. My 5th Cranial Nerve damage was extensive but limited to the Ophthalmic and Maxillary branches of the Trigeminal Nerve, which is well documented in my Daily Report Log. (See the summary "Details on curing CH" posted to www.clusterheadaches.com on 3-6-01). It is very unfortunate that the Health Care Professionals (seventeen at last count) could never render a diagnosis past telling me that my "Head Pain" was merely "Psychosomatic" or that: "You need to learn how to live with the pain," or that I needed Gamma Knife Surgery. Now the Medical Professionals are saying that I never had Trigeminal Neuralgia/ Cluster Headache or that my long awaited miraculous recovery was merely a case of "Spontaneous Remission," and had nothing to do with my experimental Remyelinization therapy. Read my Daily Report Log and draw your own conclusions.
Below you will read my conclusions on getting the Trigeminal Nerve to begin the Remyelinization process of regenerating and healing the myelin sheath covering the nerves. After years of experimenting on myself, I now feel that at least in my case, this ended up being the best course of action. I describe my own course of self-treatment here for the edification of those who might be interested. A word to the wise…
1. Fresh Fruit & Vegetable Diet, As many raw uncooked and unprocessed natural foods as possible. Sweet Peas are of special interest. The body metabolizes more readily unprocessed foods effectively. Seafood appears not to have any adverse or impeding factors in the Remyelinization process. Refrain from eating meat products since they seem to inhibit the healing process (Fatty meats especially). Personally, I am an omnivore by nature.
2. Yeast: Any dry, Super Rich yeast will do. One to two tablespoons per day. The "B" Vitamins in yeast appear to be beneficial in the Remyelinization process. Can be mixed with juice in a blender. Mfg. Twinlab /Twin Laboratories Inc.: Super Rich Yeast Plus. 150 Motor Parkway, Suite 210, Hauppage, NY, 11788, USA Tel: 631-467-3140 Web: www.twinlab.com Available at any Health Food Store.
3. MSM, (Methylsulfonylmethane) A Non-Steriodal Anti-Inflammatory. 1000mg to 3000mg capsulated crystals per day. Best method 1000mg three times a day. Morning, Noon, and before retiring in the evening. Can be taken with all meals. (Note: MSM tablets are not as effective as gelatin capsulated crystals and not recommended) Source: Health Food Stores, Farm Animal Horse Feed Stores.
4. Glucosamine, 1000mg capsulated crystals per day. Capsulated crystals are recommended. Available at Health Food Stores. Crystals alone can be purchased from Farm Animal Horse Feed Stores. Purchase empty Number "000" (Triple Aught) gelatin capsules at a Health Food Store and load capsules on your own.
5. Chondroitin 1000mg capsulated crystals per day. Crystals only available at Farm Animal Horse Feed Stores. Purchase empty Number "000" (Triple Aught) gelatin capsules at a Health Food Store and load the capsules on your own.
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Bob P
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Re: Fyber Myalgia and Clusters
« Reply #8 on: Jan 10th, 2003, 9:56am » |
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Part 2:
6. Omega 3Flax Oil, 6000mg capsules per day. Spectrum Naturals, Inc., Petaluma, CA 94952, USA. Tel: 800-995-2705, Web: www.spectrumnaturals.com Available at Health Food Stores.
7. Wheat Germ Oil, One tablespoon per day. Rich in Vitamin "E". Viobin U.S.A., Monticello, IL 61856, USA. Web: www.researchprod.com Available at Health Food Stores.
8. B-1, B-6, B-12 Pharmaceutical Injectables using a 3ml syringe. 2.5ml of B Complex and .5ml of DMSO. B-12 Injectable alone with DMSO works very well. Allow to stand combined in syringe for 4 to 6 hours before injecting into different localized fatty tissue / deep subcutaneous locations every other day. (In my case: Rt. Buttock, Rt. Flank, Rt. Side of Stomach, Lt. Side of Stomach, Lt. Flank, Lt. Buttock)
9. Hyaluronic Acid (HA) Hyaluronan Restores the elasticity / plasticity to the myelin sheath. Cf. "In-Juv" (cockscomb extract tablets) Purity Products, 139 Haven Ave., Port Washington, NY 11050, USA. Tel: 800-769-7873, Fax: 516-767-1722. Web: www.purityproducts.com Video Tape: ABC News: 02-Nov-2000 Primetime Live, "Fountain of Youth" Program Number: P001102-03 ABC News Video Services: 8000 E. Ronda Drive, Canton, MI 48187, USA. Tel: 800-505-6139 (It is advisable to take a maximum daily dose, short of incurring facial skin acne) If acne starts to occur, reduce daily dosage and use Benzyl Peroxide 5% to clear up condition. Resume use with smaller daily dosages.
10. DMSO (Dimethylsulfoxide) Liquid 99.9% pure. Topical Application: Apply directly to skin of Ophthalmic side of the forehead and scalp area once every other day. Atomized Application: Using a nasal atomizer (fine mist spray applicator) spray once up both nostrils every other day. This will be painful and only necessary if damage has occurred to the Ophthalmic and Maxillary branches of the Trigeminal Nerve. DMSO Injections: Undiluted or Unmixed injections of DMSO should be avoided. The stinging pain factor is extremely high. DMSO combined with B Complex injectables will allow your body to absorb and metabolize continuous large doses of "B" Complex, far more than would be possible with injections of "B" Complex alone. DMSO is available at Health Food Stores and Farm Animal Horse Feed Stores.
11. Steam & Sauna Bath Daily promotes highly increased blood circulation to the head and extremities. If the Steam or Sauna initiates / triggers a Trigeminal / Cluster Headache, suspend this therapy until a later time when the Remyelinization process has normalized most of the Ophthalmic Branch hypersensitivity.
***NOTE*** This report will be updated on a continuous basis, as new information becomes available.
5th Cranial Neuralgia
The Cause, the Crisis, & the Cure of Robert G. "Rocky " Frie
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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Bob P
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Re: Fyber Myalgia and Clusters
« Reply #9 on: Jan 10th, 2003, 10:47am » |
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Of course, now that I go back and look at the board archives, I remember that Rocky was a nutcase! He got along very well with Dannyboy. So take the remylinization post for what it's worth.
I'm going to delete Rocky's e-mail from my drive now.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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Ueli
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Re: Fibromyalgia and Clusters
« Reply #10 on: Jan 10th, 2003, 12:35pm » |
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On thing that both diseases have in common is that there are no tests for a positive diagnosis, it can be done only on the symptoms the patient describes. This has some consequences: Doctors usually don't know much about them and often have nothing more to offer than a cut-and-try medication approach. On one hand both diseases are often not recognized and misdiagnosed, on the other both serve as a catch-all for lots of unrelated conditions.
Fibromyalgia is about 10 times more common than clusters (about 3-5 million Americans) and therefore a welcome target for all sorts of snake oil sellers and scam artists. (And they often introduce an extra "y" to make sound it more "scientific".)
My favorite web site, QuackWatch, returns a whole bunch of links to scams for fibromyalgia.
One extremely bad example is the link Cootie has given: This expensive "heater" not only cures fibromyalgia but "boost the immune system" too, besides getting rid of "toxins", as usual not giving a closer description, except here are some unspecified heavy metals added.
Sorry, BobP, I can't see why you mention this extraordinary rude scam artist Rocky Frie, who cannot see a difference between Trigeminal Neuralgia and Cluster Headaches. I had hoped never to hear from him a gain.
I recommend to those more interested the links on Medlineplus on fibromyalgia.
Some of the meds to treat fibromyalgia listed there have also some success for CH:
Antidepressants (tricyclics, SSRI's) and muscle relaxants.
PFNADs
Ueli
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catlind
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Re: Fyber Myalgia and Clusters
« Reply #11 on: Jan 10th, 2003, 12:46pm » |
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Hiya ThisHurts,
Sorry they gave you the bad news of CH's. I don't know alot about fibromyalgia, but I have a very good friend who suffers from it, and she has had wonderful success with celexa to control it. As coinkidink would have it, I too have had good success with celexa as a preventative since I can't take the calcium channel blockers or beta blockers that most folks use because of my heart and blood pressure. I take norvasc (calcium channel blocker) in it's lowest dosage, 2.5mg for angina, and celexa 60mg (max dose) for headache prevention.
The beauty of the celexa is that it has had no side effects for me or for others I know that are on it. It's nowhere near as effective as verapamil or other preventative meds, but it's the best I can get with what I've got to deal with. I still get breakthrough CH's when a cycle is supposed to hit, but for the most part, my cycles while on the celexa consist of only shadows.
One note though, if you choose to use, for either condition, DO NOT STOP TAKING IT. I stopped when my headaches ended, and my July cycle kicked my ass. My girlfriend with the FM ran out and didn't take it for 2 or 3 days and she got her butt whooped by the FM and it takes about 2 weeks to get the levels back to the effective levels.
Wish you the best in fighting both beasts. Neither is something I'd like to deal with. Bad enough to suffer the pain of FM, but to add CH's to it I think I'd go insane...oh wait, I already am LOL
I can tell because I took a test, try it and see if you pass the sanity test:
http://www.savageresearch.com/humor/insanityTest.html
Cat
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Virginia
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Re: Fyber Myalgia and Clusters
« Reply #12 on: Jan 10th, 2003, 12:52pm » |
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Years ago, I had a Dr tell me he thought I may have fibromyalgia because I was having such incredible pain in my neck and shoulder....
Funny thing though...pain in the neck & shoulder is only on the same side as my cluster and comes at regular intervals with my head pain...no fibromyalgia here. 
Sorry to hear that you have both though...you don't need all over body pain on top of this cluster crap too!! 
Glad you found us though, welcome!
Virginia
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