Fibromyalgia Thread

[Tinker'n'Fun]

 

[tiggspring]

I never got sick like that. My initial Diagnosis was confirmed by and infectious disease specialist out of Brown university. She tested me for every wierd thing which is how we found out that I had toxoplasmosis levels so high they were technically unmeasureable Despite being treated we know my titers are still off the charts because I had amnios with each of my kids to make sure the slight risk of transfer to them did not occur.

On my last visit (she moved to California) she mentioned that she felt depite my titers being clear that I might have lyme. She also thought that I may have had it for many years (father, mother, bother, Best friends stepdad and son all tested positive the years around my diagnosis) but that the tests were showing themselves to be increasingly inaccureate and in the years since I had left RI she had begun to treat lyme based on symptoms. She felt that many of us had underlying lyme and that our bodies held at by when we were healthy then long term stress like my DH1 illness and death and/ or a accident like my hospital work injury gave the infection an oportunity to get us while we were down and then never let go.

She wanted me to try treatment as soon as we had our last baby since I refused to be treated while pregnant and we were planning to have one more child within the year.Unfortunatley this was just days before she left for California and I cannot find a local Dr that will treat lyme and those on the coast will not treat me being so far away as it would be a year or more of intense antibiotics

Her theory makes sense. Most of us were(dare I say are) overachiving A types. which may have giving a Virus a good chance to get us when we were down. I know I refused to slow down when I got sick until one day I couldnt fill out my time card and had no idea how I got from one place to another when I was driving. just didnt remember doing it

Lets hope in ten years this will be the survivors of FMS/CFIDS group and we go on to live healthy procuctive lives I want to get well enought to go back to RI and tell that nerologist in RI that told me I was depressed and then couldnt give me the diagnostic criterior of depresseon where he can stick his outdated diagnosis

 

[tiggspring]

Tiggs, thanks for the link. I am so overtired right now, but I will read it later. I have some questions, so hopefully somone might have some insight on the following:

I purchased from CVS a vitamin/herbal remedy for fibro. I usually just get my B12 shots and take 1000iud's of Vitamin D. I have some problems with fillers in the vitamins, but these were reduced and I really am looking to get some relief. They have another bottle on the end (reduce) cap, so if anyone has good to say, I want to go get it. First, the directions say to take 1-3 a day and I will only take 1 per day.

Maker: The Relief Products
Name: Temporary Fibromyaglia Pain and Discomfort Relief

Temporary Relief for: muscle pain, headache, fatigue, soft tissue pain, and muscle tender points.

Ingredient Facts:

Drugs:
Acontium Napellus 6c, 12c 18c (all say this after the ingredient) - acute pain; inflammation
Belladonna - Chronic Pain; headache
Causticum - Muscle and Nerve pain
Magnesium Phos - Cramping Pain, fatigue
Nux Vornica - Sleeplessness, Irritable bowel
Rhus Toxicodenron - Joint and Soft tissue pain

Supplements:
Vitamin C - 200mg; 333%
Thiamine (B1 version) - 1mg; 68%
Riboflavin (Vitamin B-2) - 1mg; 59%
Niacin (as niacinamide) - 20mg; 100%
Vitamin B-6 (pyridoxine HCI) - 1mg; 50%
Folic Acid - 400 mcg; 100%
Vitamin B-12 (cyanocobalamin) - 400mcg; 667%
Biotin - 200mcg; 67%
Pantothenic Acid (as calcium) - 5mg; 50%
Magnesium (as magnesium ascorbate, magnesium oxide) - 150mg; 34%
Selenium (as selenium citrate) - 100mcg; 143%

Here it the website: www.trpcompany.com

Okay, any insight? Thanks, Diane.
Rhoiola rosea root powder - 200mg

(Please note that they prefer 2 per day and all the above was based on that. I had to fix it based on one per day for me. If it doesn't bother me, I will try two at some point.

OK DO NOT TAKE THIS WITHOUT CALLING YOUR DR!!!!

I just started to look up the ingredients I didnt know. I got as far as the first one and was a bit freeked!I usually start my searches with wikepedia beacsue they have a broad range of info then work my way to more reputable medical sites then research journals when I know how wide an information net to cast. The first thing I read about Acontium Napellus blew me away. It is a poisonous plant (ok some meds come from poisons like Botox) it is used in chinese medicine to treat the yang and "in some cases to negatively affect the cardiovascular and central nervous systems including documented instances of poisoning and death"

So I checked with the cleveland clinic, Mayo clinics, Web Md and Dr Weil (many of you know he was one of the first MDs to champion natural medicine) web pages and found nothing. That is not a good sign especially when web mD and Dr weil have no listing at all.

Healthiline Did have some information . I have not used them before but it lists Stamford university Hospitals ER staff as contributors of their question section and going back to the university page it looks legit. (typing Acontium Napellus +side effects) they said this:

Background
The word Aconitum comes from the word "akone," meaning "rocky," which is the type of area where the aconite plant grows. Cured aconite preparations have a long history of use in Chinese medicine. Processed aconite was used to treat heart failure and other heart diseases. However, aconite has been repeatedly associated with cardiovascular (heart) adverse events. For this reason, the German Commission E does not recommend its use.

Aconite is well known for its extreme toxicity. The tuberous root is used in traditional medicine, although all parts of the plant are considered to be toxic. Aconite also has a near worldwide historical usage as an arrow poison and as a poison in executions, homicides, and suicides. Aconite is also said to be an ingredient of "flying ointments" used by witches to imitate the sensation of flying.

Aconite has been used in very low doses to treat neuralgia (nerve pain), sciatica, and rheumatism. Aconite is also an ingredient in homeopathic preparations used for cold and flu symptoms, heart palpitations with anxiety, acute inflammatory illness, and peripheral nerve pain. Overall, the efficacy has not been established.


Ok I was running when they mentioned poison darts

If you really want to take this find a good homeopathic Dr in your area.

 

[Tinker'n'Fun]

 

[brighteyes]

I am of no help, sorry I just take a regular multi vitamin and calcium with vit D and magnesium, glucosomine with chondroitin.

I am also planning on taking a super B complex to help with energy
That's all I know.

 

[brighteyes]

Tigg,

I have to fill out an online application for the school board so I can submit my resume and cover letter for jobs. There were two posted today that I didn't get to in time. There are two more that I have to apply to by tomorrow. I missed two jobs already but it takes about two hours to put your info online first.

p.s. i hate guys. they are all dorks. This guy Ithought was nice is a winner. I will tell more later.

 

[tiggspring]

Tigg,

I have to fill out an online application for the school board so I can submit my resume and cover letter for jobs. There were two posted today that I didn't get to in time. There are two more that I have to apply to by tomorrow. I missed two jobs already but it takes about two hours to put your info online first.

p.s. i hate guys. they are all dorks. This guy Ithought was nice is a winner. I will tell more later.

Sorry your having such a heard time with the aps. I can't stand being on the computer when I'm not up to it and anthing where I can make a mistake ans press. SEND by accident well that's just taxing on the brain

 

[tiggspring]

They say you have to kiss a lot of frogs to catch a prince. I just ignored all the frogs I only dated 3 guys seriously 2 I married. I would rather be alone than with a dork. Dated on guy I refered to as mr. Potato head. Nice but my god one date was enough!! Good luck on that frount!

 

[brighteyes]

I know I hate when they don't work

But am not looking forward to writing cover letter and all and uploading it all.

 

[EDuke98080]

Why aren't you all sleeping? LOL Just kidding

 

[weluvdizne]

Hi all! I hope you have all been well. I have not been around at all lately due to pregnancy complications. Thankfully it's leveling out a bit now. My blood pressure had shot up to 168 / 94. One dr wanted to admit me to the hospital, the other said I could just go home and start a beta blocker. So, they gave me atenolol. It's working, my bp is now stable at approx. 117 / 76. All of my dr.'s are pleased with this. However, as with most meds, it is giving me horrible side effects. The worst, of course, is fatigue. Let me tell you, I don't know how long it's been since I was able to go to bed and fall asleep. Used to be laying there for about 2 hours, but last night, I don't think I lasted 5 minutes. Only 11.5 weeks left. Hoping my body will at least return to my pre-pregnancy status after the baby is born.

Anyway... I was on cnn.com today, and stumbled upon this. CFS patients test positive for a mouse virus. A bit disturbing. But, hey, maybe this will lead them to a treatment. Here's hoping!
http://www.cnn.com/2010/HEALTH/08/23/chronic.fatigue.virus/index.html?npt=NP1


Hope all is well for everyone. Sorry this was so long.

 

[tiggspring]

Hi all! I hope you have all been well. I have not been around at all lately due to pregnancy complications. Thankfully it's leveling out a bit now. My blood pressure had shot up to 168 / 94. One dr wanted to admit me to the hospital, the other said I could just go home and start a beta blocker. So, they gave me atenolol. It's working, my bp is now stable at approx. 117 / 76. All of my dr.'s are pleased with this. However, as with most meds, it is giving me horrible side effects. The worst, of course, is fatigue. Let me tell you, I don't know how long it's been since I was able to go to bed and fall asleep. Used to be laying there for about 2 hours, but last night, I don't think I lasted 5 minutes. Only 11.5 weeks left. Hoping my body will at least return to my pre-pregnancy status after the baby is born.

Anyway... I was on cnn.com today, and stumbled upon this. CFS patients test positive for a mouse virus. A bit disturbing. But, hey, maybe this will lead them to a treatment. Here's hoping!
http://www.cnn.com/2010/HEALTH/08/23/chronic.fatigue.virus/index.html?npt=NP1


Hope all is well for everyone. Sorry this was so long.

I'm so sorry you are having such a hard time!!!! Hopfully the next 11 weeks will alow you to enjoy your pregnancy more

Thank you so much for this link. Because of all of my years working in hospitals and my injury it was very difficult to trace back a source of my problems. Lets face it I was exposed to everything. However for a year and a half I only had migraines and verbal issues that I now know are complicated or complex migranies. I did change my work habits but at the time the symptoms seemed to stableize. However my Major crash stated when DH and I were about to get married and got a new apartmentment. It had a tiny 8x8 dirt floor room. We lived in a basement apartmentment of a 200 yr old home. It also had mice. Since our litterbox was in that room I spent alot of time cleaning it and breathing in alot of Dust that took hours to excape the house. DH was working and getting his Masters degree so I was home twice as much as him. Just months after that my Grandmother kept insisting I didnt look right and within 8 months I was disabled. I had fought the migraines for 2 years at that point but prior to cleaning the basement I was funtioning although not at my prime.

We'll see if all this reasearch is finally going to pay off!

 

[Tinker'n'Fun]

 

[brighteyes]

Weluvdizne.

I hope you are feeling better soon as well. The exhaustion sucks to put it mildly.

Hope you do get to enjoy the last of your pregnancy although I don't think I enjoyed the last few weeks even though I did not have fibro yet!

The mouse thing, I can totally see that. There are mice/have been mice up in my attic of where I live among other things as a bit of the siding was off the house for a bit. When they fixed it they never looked in there or cleaned it out. I have seen things coming out of there with prey... But they still did not do anything.

I am too scared to go up there myself. I was not sick until I moved here. It would be interesting to see if there was a link. Since Ive been here my allergies have exploded, sinus problems all year long, can't wear eye makeup cause my eyes water all the time. SO ya , I think it;s my house.

 

[Tinker'n'Fun]

 

[EDuke98080]

Hi all,

Sorry to hear about the pregnancy complications. Sending good thoughts for you and the baby.

Tink I hope your rash/bite feels better soon. I hate benadryl, makes me non functional.

Bright, hope you got all your paperwork stuff done the other nite and got some rest.

Sorry about the sleeping post, I was so tired and feeling miserable about being awake and when I realized that you gals were on too in the middle of the night all I could do is laugh at myself for being so wound up and feeling so alone. Not sure I can across as intended.

Hope everyone has a pain free week!

 

[brighteyes]

Why aren't you all sleeping? LOL Just kidding

Didn't even see this. cause I am a die hard night owl - even when I am tired I don't like to go to sleep!! But then I don't want to get up early either.

 

[brighteyes]

Hi all,

Sorry to hear about the pregnancy complications. Sending good thoughts for you and the baby.

Tink I hope your rash/bite feels better soon. I hate benadryl, makes me non functional.

Bright, hope you got all your paperwork stuff done the other nite and got some rest.

Sorry about the sleeping post, I was so tired and feeling miserable about being awake and when I realized that you gals were on too in the middle of the night all I could do is laugh at myself for being so wound up and feeling so alone. Not sure I can across as intended.

Hope everyone has a pain free week!

Yes you did - don't worry

 

[Tinker'n'Fun]

 

[Tinker'n'Fun]

e.