Fibromyalgia Community
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Help from anyone

Ok, it's not been officially confirmed I have Fibromyalgia yet, however I've been told by my doctor it's highly likely. I see a rhemotologist on the 22nd of this month. I need advice how what to say/tell and things I can do to possibly help. Or why the heck I have such a weird mix of issues.

On a regular basis I have pain. It feels muscular, almost akin to growing pains. I get cramping in my lower legs and feet (like I've been standing all day, but I don't) pain behind my knees, down the back of my neck, the base of my skull, across my shoulder blades and across my shoulders along the top. I get daily headaches, fatigue (I sleep 8-9 hours a night and wake up exhausted) and a weird mix of other stuff. I also have IBS, Anxiety (it's started to get worse) PTSD and Depression (from child abuse) and deal with chronic nausea and for some reason hypoglycemia. I've been tested for diabetes but its all perfectly fine. I've also had my thyroid tested, B12 levels, basic metabolic panel, multiple ultrasounds, CT scans, MRI's, gastric emptying tests, HIDA, barium swallow, endoscopy/colonoscopy, extensive blood work, etc and for the most part everything is fine and physically I appear healthy.

I feel like I'm going crazy because none of it makes sense. NONE of these match and so I never really sought out help. Now that I have, people are saying I'm a hypochondriac and I'm really not. I just don't know what to do anymore, I just know I don't want to live like this. The pain and nausea and fatigue make me just wanna die somewhere.
12 Comments Post a Comment
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553995_tn?1332022440
Hi, you sound like many of us with Fibromyalgia and/ or
Lyme disease.
Bring all your test results with you. Think if you've
Suffered a trauma before you started being symptomatic.
Car accident, loss of a loved one, flu.
The slamming headache at the back of my head
And stiff neck was Lyme. I did not have the bullseye
Rash.
There is a psychological symtom to Lymes where
it crosses the blood brain barrier and causes
depression and anxiety.
Test for Lymes.
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1194973_tn?1385507504
Well I was abused as a child. That's the only trauma I've ever dealt with. These symptoms have been going on for many years now, since I was a teenager (I'm 23 now) so I wouldn't think it would be Lyme disease.
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553995_tn?1332022440
I had Lymes and was misdiagnosed with Fibromyalgia for 13 years.
Just a thought
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1194973_tn?1385507504
Well I was also pregnant in that time and hospitalized several times. I mean, I'll get tested for it but I highly doubt it'll be positive or even show anything.
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553995_tn?1332022440
Regular labs cannot test properly for Lymes. Ask your doctor about IGENIX or MDL. These are qualified labs for these tests.
Look up LDA or Lymenet. ILADS is another site. Lymes has been in epidemic proportions for years now.
Good luck, I hope you find an answer luv.
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1194973_tn?1385507504
I have a doctors appointment later today, so I can ask they do the testing for this. I assume it's just blood work, so that makes it easy.
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1194973_tn?1385507504
I would have been exposed in 2009 if I somehow have this... I think the CDC has maps that mark reported outbreaks...
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1194973_tn?1385507504
Yup. There were 51 reported cases in 2009, and 21 in 2010. We don't have many cases of where I live.
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1530171_tn?1362547225
Clysta, just google Dr. David Martz in Colorado!
This will give you an idea of how difficult it is to get the right answers.
And the politics surrounding Lyme disease and its company (many co-infections!) are frightening, to put it mildly!
Your own doctor is probably part of this (Knowingly or not!)
Getting Lyme disease ruled out or diagnosed is extremely difficult.

He was tested for Lyme Disease after he was unknowingly stricken with
this disease and later developed ALS and forced to to retire form his medical practice early.
Six times!!!!!! the results came back negative! And only the 7th time  the results came back positive and he began treatment (he was confined to a wheelchair or his bed by this time).
He began walking without assistance and experienced a dramatic improvementwithin 12 weeks.

Let me know if you need any details. I've already replied to you in a more recent post.

Best wishes
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Avatar_m_tn
Get tested for Lyme with Igenex.

Also, in the meantime get on The Guaifenesin Protocol for Fibromyalgia. Don't put up with these horrible symptoms. I am 25 years old and have been living with these awful symptoms after serious trauma age 23.

Love.
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1530171_tn?1362547225
lholt, you probably did not mean to address this post to me.

I know of Dr. R. Paul St. Amand's work and the use of Guaifenesin,
an expectorant drug. for treating FMS.

it will not work for everyone & some caution must be exercised;
(I understand your desire lholt to share this with other sufferers )
This protocol ideally should be monitored by a health professional, as one of the serious side effects is the formation of  kidney stones in higher doses
( the efficacy in the recommended starting dose is too low for most people to experience results, so the protocol calls for increased dosage till intoleranceis reached,)  If self treating you must become very familiar
with all the details of this protocol!
Due to the lack of published studies in peer-reviewed medical journals
( the only large study was never published in a medical journal, as the placebo effect was greater than the control-I have not read this study ) there's mostly anegdotal evidence out there.
The fact FDA has not approved this for fibromyalgia, is to my opinion an
investment issue .  It  would take up to a billion dollars and very little certainty of going to market.
Presently it is an OTC drug and if the entire protocol is followed properly,
it may work indirectly to improve FMS symptoms, based on my own observations:
1. Improved sleep quality (remember Guaifenesin is an expectorant approved for upper resp. infections)
2.  Alkaline internal environment (increased PH)
3. Low carb diet (helps with candida management, blood sugar regulation
and to lower tartaric acid levels, among other benefits.

Best wishes!
Niko

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Avatar_f_tn
I have went through all the symptoms for 23 yrs (since you were born:)  Ask the rhemotologist about the 18 TPRs.  Diagnosis of fibromyalgia is made if 11 of these 18 points causes pain (and boy do they-come off the table). Areas throughout the body may feel "bruised" when touched.  The tender point is considered to be positive if an approximate force of 4 kg of pressure causes pain when applied to the specific points.  Widespread pain must have been present for at least 3 months with the associated tenderpoint pain in order for Fibromyalgia too be diagnosed.
I was put on Lyrica and have had an easier life, but those flareups  still so up with a vengence!  Especially weather change and stress.
It was also my rhemotologist that finally diagnosed me after years of confusion and sometimes just felt like I didn't be here.  I'm sure you have someone in your life that loves you and would support you.  Just hang there girl.  
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