Fibromyalgia Community
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Avatar universal

Just got diagnosed

Hi everyone,

I was just diagnosed with fibromyalgia this week and have some questions.  The first is, what kind of doctor should be over-seeing my treatment in regard to fibromyalgia?  I've noticed many of you mention seeing neurologists and some mention rheumatologists.  My new doctor, an internal med specialist, is the one that diagnosed the fibro and prescribed lyrica to start with.

My other question is in regard to numbness.  I've developed significant numbness that is constant in the hands and feet and occasionally up to the knees and elbows.  I've lost a lot of strength and function as a result.  Is it likely that I will regain the use of my hands and feet as the fibromyalgia is treated?

Thank you
17 Responses
Avatar universal
Any other symptoms?  Headaches, eye pain, stabbing sensations, involuntary muscle movement, night sweats, IBS, fatigue, joint and muscle pain, sore throat or lymph nodes tender?
Avatar universal
Theoretically, ANY doctor can diagnose and treat fibro, however, rheumatologists are usually the most knowledgeable about it.  If you're comfortable with staying with your current doctor and he seems knowledgeable about fibro, you don't need to change doctors.  However, it never hurts to get a second opinion and a rheumy may very well have ideas/suggestions for treatments that your family doctor doesn't.

I, personally, was seeing a rheumatologist until she stopped accepting my insurance.  Now it's my family doctor who treats me.
Avatar universal
Yes, I do have all of those symptoms you mentioned except for the IBS.  I've had a thorough work-up at Mayo Clinic and have gotten a second and third opinion.  Other diagnoses include MGUS, degenerative arthritis, and a genetic variant on the MEFV gene.  They've ruled out all the big stuff like underlying infection, Lymes, lupus, MS, Sjogren's, thyroid issues, cancer, etc.  At this point, some of the symptoms that have not been explained are the significantly blurry vision, yellowing of the skin in small areas, low-grade fevers, what's causing the arthritis, numbness, and so on.  There are also kidney stones and a possible salivary stone, fluctuating potassium levels, high heart rate, and low blood pressure leading them to question adrenal insufficiency.
Avatar universal
I forgot to add, that the eye pain along with flashes and floaters is also unexplained.  The eyes are severely dry (along with mouth and skin) and are not responding to any treatments available such as eye drops or plugs.  There is also involuntary muscle twitching, mainly on the face, back, upper arms, chest, and legs, sometimes accompanied by muscle cramping mainly in the hands and feet.  I think part of it is due to the fluctuating potassium levels that go from abnormally low to high within a few days.  However, much of the numbness, spasms, and cramps seem progressive and don't go hand in hand with the potassium levels.
1830047 tn?1321667793
Remember  that a number of the diseases that you mention are ruled out may only be temp ruled out.  My issues don't include numbness but I'd think there is a possibility it will improve as other issues.  It may not. We tend to live day to day.

Read up on getting excers and not overdoing it on good days.  Good diet and sleep are also important and you should have a sleep study done if not already.  I had plm and sleep apnea and had no idea.

Good luck and don't pay attention to people who don't take FM seriously.  It's getting better research/understanding.  Good doctors take it seriously but it may be very hard for friends to understand.  I rec you make the most of this site and benefit from the info and support it offers.

Stay as positive as poss but don't beat yourself up if it gets to you from time to time.
Avatar universal
I'm not a medical doctor, but I can give you direction to hekp you.  In my opinion you have either Lymes with coinfections and/or an Infectious Mycoplama infection.  They both are chronic intracellular bacterial infections.  Lymes has Bartonella. Symptoms primarily are but not limited to sensativity to light, stinging eye pain, chronic headaches and burning sensations on limbs.  Also bottoms of feet hurt and sore ankles.
  Babesia, another coinfection is like malaria.  It resides in the red blood cells.  It causes lack of breathing, shortness of breath, waking up in the middle of the night 2-3 times, numbness/tingling in extremeties, cold hands and feet.  The Babesia swells up the blood cells and causes them not to carry oxygen and since they are deformed, they cant pass through the tiny capillaries in your hands/feet and brain.  Make sense?
  The doctors that actually treat lyme are known as LLMD doctors.  They actually know these pathogens exist whereas standard doctors give you 4 weeks ABX and say you are cured.  It takes Macrolides to cure these infections, and long term as well.  Months or years.

  Infectious Mycoplasmas are a weird bacteria, small as a virus, lack a cell wall, and have to use your cells to proliferate.  Kinda like a parasite.  These are now being found in Lyme patients as well.  Forget anything you have learned about Lyme.  It's not just ticks, but biting flies, mosquitoes, other biting insects AND once it is inside a human, it has been found in every body fluid.  That's what I said.  Every body fluid.  So this is transmittable.  If your husband or lover starts complaining of aches and pains, you need to consider this.

  A good site for Infectious mycoplasmas is *****.org.  Look under autoimmune illnesses  and infectious disease research.  Read the bio of the researchers and the founder.  Nobel prize nominee in cellular pathology.

  Read  "Cure Unknown"  a Lyme book by Pamela Weintraub.  excellent book.

  You need to contact ILADS and find a doctor near you that is willing to treat this intracellular infection w/ long term treatment.  Main goal is to boost your immune system as it is now dissabled, start killing off the bacteria/hold them in check, and let the immune system clean up what is left.


  Lastly, come to the Lyme page, post your symptoms and you will get as much info as you will need.  Main thing is you need to get treated ASAP since the bacteria is not being killed with symptom relievers.  Take Magnesium as the bacteria utilizes it to reproduce.   Lastly, if you have had endometriosis, PolyCystic Ovarian problems or a hysterectomy, I'm hitting the nail.  If you have  some days where you feel OK, but then have a day or two where you feel like total crud, I'd be willing to bet that this is a verg good diagnosis.  Buit that's my opinion.  Others here accept Fibro as a real disease when 99% Fibro cases are Mycoplasmal induced.
Avatar universal
One other thing   do you retch/feel like you are going to throw up occasionally?  have sore teeth? occasional vertigo?  sensativaties to loud noises, tastes, smells?  Get angry or emotional easily?  Mood swings? Heart feels like skipping a beat, chest pain?  get feeling like charley horse in legs?  

  I am helping a fellow out now who has the same condition and he has passed over 100 kidney stones in past fer years.  Your symptoms are to far ranging to be 20 different conditions.  One intracellular bacteria can go throughout body causing systemic illness.  You can either accept you current diag, or do some research about what I am saying and get better.  It won't be overnight, but you WILL get better.  Your illness is exactly like Gulf War Illness, but the Lymes doctors know how to treat this.
Avatar universal
Thank you for the information.  You had mentioned some of this to me before in another thread and I did bring the info to my doctor at Mayo.  She appreciated the info and made arrangements for tests to be done through the laboratory you recommended.  I was told that the results were not indicative of the conditions you mentioned, but one doctor did state that the results don't necessarily rule them out.  My new doctor seems to think like me - he recognizes that there is something underlying going on here that is fueling everything and wants to get to the bottom of it rather than simply treating symptoms.  

I'm curious, if you don't mind me picking your brain, autonomic dysfunction matches my symptoms to a tee, and also seems to match what you are saying - is there a correlation there as well?
Avatar universal
Thanks for the advice.  Yeah, I realize the very things that were ruled out may end up not truly being ruled out.  Years ago when these symptoms started, I had an ANA positive for lupus, but the doctor chose not to treat it because the symptoms were mild at the time and the treatment would have been worse than the symptoms.  Now that the symptoms are debilitating, the ANA and other inflammatory tests come back clear as can be despite obvious inflammation!  My gut tells me that a few years from now, there will probably be a lupus diagnosis waiting for me.

I will definitely make the most of this site.  I think this site, by far, surpasses other medical sites out there - it has such a great balance of professionals that know there stuff and patients that have "been there" whose experience speaks volumes!  :)
Avatar universal
I did several searches for you on AD and mycoplasma.  They all state mycoplasmas a possible trigger,  but not yet confirmed.  I can't cut and paste sites as medhelp like to eliminate any site info someone provides.  They even crossed out IMMED (dot) org  the site i suggested you look into.

  ALL your symptoms are Lyme/Mycoplasma.  Every one of them..  Do a google search on Dr Garth Nicolson /Mycoplasmas.  Call a lab rat (technician) at IMMED and tell them your symptoms.  He will say verbaitim what I have told you.  No standard doctor, even a ID doc, will be able to figure this out.  Type in Lymes/mycoplasma/Mayo clinic, Cleveland clinic, etc and read the responses who said they went to the Mayo as well and were told they were fine.

Lymes/mycoplasmas causes chronic inflamation throughout your body, BUT your tests will vary a little from the baseline.  A little above, a little below but nothing out of the ordinary.  That's why these bacteria are known as Stealth Pathogens.

Research on Youtube Prof Dr Lida Mattman.  She did an Autoimmune conference someone taped.  She was a Nobel candidate, Immunologist/Virologist, Yale PHD, taught for 35 yrs.  Watch that video.  The standard labs can't find the bacteria because they don't culture it long enough and with the right solution.  And if the lab Tech dosen't know what to look for, HE WILL NEVER FIND IT.  The bacteria is EXTREMELY slow growing, divides every 10-28 days.  Not exponentionally like standard extracellular bacteria.

heres someone just like you.  Symptoms sound familiar.  If you do some research on IMMED you will understand why you will never be correctly diagnosed at the Mayo.  Or anywhere else other than specialized labs that look for the genetic sequencing of the bacteria.

Avatar universal
BTW, ask NIKODICRETA if I know a thing or two.  that person will confirm everything I have said.
Avatar universal
So what are the treatments if you do test positive for the bacteria?  Does the treatment then cure the fibromyalgia symptoms?  How difficult is it to treat?

Thanks for your input.
Avatar universal
Dr Garth Nicolson told me specifically that 99% Fibro cases are Mycoplasma related.  An ILADS Dr will run tests at very specialized labs to run either a Mycoplasma Panel ( M.Hominis, M.Fermentans, M.Fermentans-Incognitus, M.Penetrans, M.Genitalia) or individualized tests.

What they do is treat the bcateria w/ Macrolides ie: Zithromycin,clindomycin, Omnicef, Minocin...etc.  You  need to use a drug that has high penetration powers that can go through the blood/brain barrier (BBB), CNS and deep into tissues (muscles and brain).  Standard docs do not know what to look for, give you a quick diag, and say "Here, take this Cymbalta & Benzodiazapam."
   That does NOTHING for curing the root problem.  It's like getting a Earl Sheib paint job over a rusty car.  It might mask the rust, but it will soon rust through the new paint.  Understand?
   ILADS doctors KNOW there are Mycoplasmas and Borrelia that cause these chronic illness and know the only way to treat them is w/ long term ABX to stop the replication of the bacteria, kill the exposed bacteria, and boost the weakened immune system to help fight off the infection.

  Treatment can be long term, such as 1-2 yrs of cyclical drug tratment, fungal treatment.  But you will get better.  Otherwise you will continus to slide downhill like the woman I just helped.  She was diaged w/ Parkinsons, then MS, now she has the dubious diag of ALS,  

  She followed my advice and is now getting treatment.  She was in a wheelchair, now she can walk again.  That to me was the icing on the cake. Not some proof in a textbook, but physical proof I could see.
Avatar universal
I LOVE what you just said in your post.  I am beyond frustrated with doctors that simply want to throw a superficial medication at the problem that only suppresses symptoms rather than getting to the root of the problem and dealing with that.  

I'm a therapist, and I have to say that the medical field really discourages me.  My job as a therapist is to get to the root of the problem and deal with that.  If I were to provide superficial treatment modalities to my patients, it would be unethical.  So, why is it any different for medical doctors that choose to over-look the problems and give patients treatments that really aren't the best option for them?  

Sorry, I just had to get that off my chest.  :)    I realize that not all doctors fall for the superficial meds, but I would love to see more accountability for those that do.
Avatar universal
    Well, i hope others read this post and see themselves. And seek help.  The proof is there, it has been documented.  All you need to do is research IMMED, find an ILADS dr, and get testing.  Then be on your way to better health.  I WISH someone had done this for me 24 months ago.
  A psych I saw (was following the rules) game me BOXES of trial Cymbatla because it was a SSRI and was supposed to help w/ the twitching.  Found out later the twitching is from Magnesium and the bacteria utilize it causing muscle twitches.  The Psch said the med companies were doing research and asked her to note who got better and who did not.  

I know now, and knew then I am/was not crazy.  It peeves me to no end that the doctors can't "see" this bacteria, so it dosen't exist.  So thence, YOU are the problem, not some "imaginary" infection.  GRRRRRRRRRR  
Avatar universal
  Also research the HHV6Foundation.  Chronic intracellular bacterial infections (mycoplasmas/Borrelia) damage you immune system to the point where all latent viruses you have suppressed, come to the surface and are now active.  HSV1, HSV2, Cytomegalovirus, Enteroviruses, etc.  Go look at the HHV6 foundation and see what happens when a latent HHV6 infection comes out of dormancy.  Ask you "good" doc to get a IFA test for HHV6.  If it shows high, you are immunosuppressed.
1530171 tn?1448129593
Hey Everybody!
I enjoy the Positive direction many"Medhelper" people are taking lately.
For those who truly desire to triumph over their conditions, combining
truly useful REAL and UNBIASED information, choosing to be survivors
and active participants in their own Healing, can bring about recovery which far surpasses any "established" expectations.
Leave no stones unturned, do NOT accept the "status quo", trust and have faith in your Inner Healer, and project a Complete Makeover of your Body, Mind and Spirit.
I have come across many people that have overcome Terminal Cancer,
Bi-Polar, MS, Severe Addictions, Auto-Immune Diseases and  more.
In my Holistic practice, many so-called miracles are becoming  "normal"
life events. I'm still in awe when it happens though, as the laws of the Universe continue to amaze me.
After all, I was not supposed to be around, according to the doctors, following not one but two horrific and near fatal accidents,on top of a pre-existing un-diagnosable  Auto-immune Disease, with a very pessimistic prognosis.
Well, today I enjoy perfect health -not because of conventional medicine-
LOL!  (Some times you need to take matters in your own hands)
So please, empower yourselves, become proactive in your health matters and welcome the advice of members that have been through it all and have absolutely  NOTHING to gain, other than the satisfaction that they are getting by helping other sufferers, reclaim their health and their lives.
Thank you for this great contribution!
Of course all information must be screened and checked, before acting upon it. Not everything will apply to everyone's situation.
Focus on your Wellness, follow the fundamental rules of Health
and start your  Body-Mind-Spirit Makeover Today! Why not?
Need support and details for this, let me know.

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