fibromyalgia Tests and Medications

Posted by Sundance(RB) @sundance6, Dec 28, 2020

I've had two different diagnoses over the last two years. One was for Lyme Disease which was diagnosed by sumptoms, the other for Fibromyalgia.
I've read everything on Lyme Disease. Lyme and Fibromyalgia are very close symptom wise. I have read where there are no tests and medications for Fibromyalgia. Messaged my PCP today and he says there is so such things.
I just ordered a book from Mayo on Fibro. Can anyone help me?
Thanks,
Sundance (RB)

@sundance6 You have both a Fibromyalgia and a Lyme Disease diagnosis. These alignments are very close symptom wise. You are looking for information related to tests and treatment.

Members like @lioness and @janett18 have experience with this topic and may be able to help answer your questions.

Below I have linked a discussions that may be of interest to you.

Regarding fibromyalgia, @nire mentioned blood work panel for testing discussion and specific post is linked below.
– New reality with four autoimmune diseases https://connect.mayoclinic.org/discussion/new-reality/
https://connect.mayoclinic.org/comment/353213/
Also regarding fibromyalgia, @slim1938 mentions many diagnostics in his post and I have linked the discussion below.
– Positive ANA and ENA Panel https://connect.mayoclinic.org/discussion/positive-ana-and-ena-panel/

Regarding Lyme disease, @beanie300 mentioned testing and I have linked the discussion below.
– Autoimmune? Undiagnosed and don’t know where to go next https://connect.mayoclinic.org/discussion/undiagnosed-and-dont-know-where-to-go-next/

You may want to scroll through the discussions I linked and looked for previous suggestions related to your question.

Below I have also linked a discussion related to Mayo's Fibromyalgia Clinic.
– Mayo Clinic's Fibromyalgia Clinic https://connect.mayoclinic.org/discussion/mayo-clinics-fibromyalgia-clinic/

I'm wondering if you have or have considered an intense treatment like the Fibromyalgia Clinic?

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I don't know if it is any help, but years ago a rheumatologist said I had atypical fibromyalgia. He prescribed Savella. It made me so nauseous I stopped taking it. I don't think I have fibromyalgia. Two rheumatologists said I did not have it and, of course, they did not know what was wrong with me. Good luck if you have it. I have heard of some women using the TENS machines. I do not know anything about them, but do recall that was suggested at some point, but I did not use one. Good wishes to you, @joybringer1

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@erikas

@sundance6 You have both a Fibromyalgia and a Lyme Disease diagnosis. These alignments are very close symptom wise. You are looking for information related to tests and treatment.

Members like @lioness and @janett18 have experience with this topic and may be able to help answer your questions.

Below I have linked a discussions that may be of interest to you.

Regarding fibromyalgia, @nire mentioned blood work panel for testing discussion and specific post is linked below.
– New reality with four autoimmune diseases https://connect.mayoclinic.org/discussion/new-reality/
https://connect.mayoclinic.org/comment/353213/
Also regarding fibromyalgia, @slim1938 mentions many diagnostics in his post and I have linked the discussion below.
– Positive ANA and ENA Panel https://connect.mayoclinic.org/discussion/positive-ana-and-ena-panel/

Regarding Lyme disease, @beanie300 mentioned testing and I have linked the discussion below.
– Autoimmune? Undiagnosed and don’t know where to go next https://connect.mayoclinic.org/discussion/undiagnosed-and-dont-know-where-to-go-next/

You may want to scroll through the discussions I linked and looked for previous suggestions related to your question.

Below I have also linked a discussion related to Mayo's Fibromyalgia Clinic.
– Mayo Clinic's Fibromyalgia Clinic https://connect.mayoclinic.org/discussion/mayo-clinics-fibromyalgia-clinic/

I'm wondering if you have or have considered an intense treatment like the Fibromyalgia Clinic?

Jump to this post

Erika, Thank you so much for the information! As I said one doctor said it is Lyme the other Fibro. Really frustrating because I have fought it or both for 2 1/2 years.
Symptoms lead to Lyme, but have been doing research during the virus shutdown and have read some information that may lead to FBS!
My email was incorrect! I should have said I have read where there are tests for FBS! But my PCP says there are none! Thanks for the information! I will read it over! Hope you have a Wonderful and Safe New Years!
Sundance (RB)

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JB, Thank You So Much for the info! I've been chasing either Fibro. or Lyme for the last two and a half years! It has been totally debilatating! My work entails a lot of travel, if I take a trip I can be down for a month orr better!
Part of my business is the golf industry, I've played for 65 years! I can't play more than a hole without getting dizzey and ready to drop! The other part of my business is in the fishing industry. If I go on a stream or river my balance is so bad I fall in!
Have you had fatigue, headaches, balance, brain fog and other things also!
Starting all the test trying to find out what was wrong with me I use to laugh, I said I've had so many MRI, Brain Scans and other radition I glowed in the Dark! Also said I have no more blood left in me to take!
How are you feeling day to day?
Sundance(RB)

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Erika, I live in New Mexico so AZ would be closests. Do you have any information you could send me about the Clinic? Or a site I can review?
Thanks,
Sundance(RB)

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Hi my practice and research before retiring as M.D. N.D. re Fibromyalgia, pointed to means and ways of getting into the tissue layers, where the disconection occurs, I have found 90% of Lymes, Fibromyalgia, and Sjogren's syndrome patients respond well to Hyaluronic Acid with Vit B Rosehip,lavencer serum, along with Palmitoylethanolamide in 500 mg with acytel l carnitine vege capsules. The acetyl gives you energy, the PEA Palmitoylethanolamide opens your, endocannabinoid system, for pain.

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Also it may be good idea to find out if you have a genetic mutation MTHFR compounded from both parents if you do your vit b12 and D as well as Active Folate would be lacking, including the Acetyl l carnitine.

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Thank You so much for the information! Can you tell me where to get some of the medications/Herbs? I will research them in the morning also! I have breifly looked at Sjogren's syndrome before. But took a closer look tonight! I have suffered from Dry Mouth for some time! I had cataracts remosed a couple of years ago so I don't seem to have dry eyes.
Are there any tests for Fibromyalgia that you know are creditable?
I would appreciate any direction you may be able to give! I've suffered from whatever it is for 2 1/2 years! At 74 it has made life hard, escpecially the fatigue factor, joint and muscel pain and other things.
I've been very active all my Life! I've played golf and fly fished for 65 years! I don't have the strength or energy to do either of those anymore!
Thanks,
Sundance(RB)

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Sundance I feel for you your compounding chemist should be able to make up the Hyaluronic acid serum for you here are details to assist compounding
CAS 50-81-7 Empirical Formula (Hill Notation) C6H8O6 Molecular Weight 176.12,

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here is my sequence re the serum I have made into a dropper

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cant seem to send send me your email so i can send it through as pdf

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Ronald, Here is my email address to send the PDF.
Let me know when you send it so I'll check my Junk mail file if it dosen.t come up in my Inbox!
Thanks
Sundance(RB)

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