Poll for Members' With Fibro

[PlateletGal]

I was just wondering how many of you would support a "Living with FIBRO/CFS" board ?  I know there are so many similarities with our conditions and many people who have fibro often have signs of CFS and vice versa.

Please let me know what you think and if you guys would like another board, then we can notify Med Help.

[patsy10]

This board is not very active.  I don't know if it's because it is fairy new or what.  immunesupport.com is very active for both CFS/FMS if anyone is interested.

[PlateletGal]

Hi Patsy,

I'm familiar with immunesupport.com --- thank God for websites that educate people on fairly new and controversial (although after reading the research, I'm not sure why) conditions.

I hope eventually we could get a CFS/FIBRO --- possibly MCS board here. I know that there are an estimated 1 million people in this country (CDC) who have CFS and 80% of them have not been diagnosed. There are approximately 8 million people with fibro --- not sure how many people have MCS but MCS is common in many CFS patients'.

[patsy10]

Maybe this forum will pick up in time.  The neuro one is very active.  I wonder if few people know it's even here.

Would you mind listing some of your CFS symtpoms?  My symptoms are way more than just fibro.  Just wonder if some are CFS.  I looked up ME and I sure do fit that bill too...

Thanks,

Patsy

[PlateletGal]

Hi Patsy,

I think I've had undiagnosed CFS for many years, but I can't pinpoint when I first "got it". When I was a teenager, I was ill with mono and then another condition immediately afterwards. After that, I had allergy problems and numerous infections. It seemed like I was in the Urgent Care almost every other week and all they could do for me is prescribe antibiotics (boy do I know better now !). My first initial symptoms that I can remember were allergies, fatigue, muscle aches, feeling like cement blocks were attached to my legs, short term memory problems and then later on... unrefreshing sleep, severe headaches, heart palpitations, shortness of breath & gastrointestinal problems. Years later... food intolerances, adrenal problems, dizziness, POTS, trouble concentrating, weakness & joint pain --- and this is when I started getting high ANA titers of 1:640. I've also had numbness on occasion. Its a terrible illness, but the research is there. CFS affects your endocrine, nervous and immune system and that is why this illness is so complicated and why there are so many symptoms. In addition, Dr. Paul Cheney has been doing research on CFS patients and diastolic cardiomyopathy. I know the last time they took my BP, they couldn't hear my diastolic number.

I am still on the MP --- I still have a ways to go, but can tell that I'm making progress. I'll keep you posted if you want.

[patsy10]

Yes, keep me posted.  I assume you mean Marshall protocol???  I've read about it and would like to try it myself.  The problem is getting a doctor to go along with it.

[PlateletGal]

Hi Patsy,

On the Marshall Protocol's website's (General Board), you can post and request for one of the Moderator's to send you a private message (on the board) of physicians' who practice the MP in your area.

There are more fibro patients' joining the MP now and tons of CFS patients'. Of course many of the CFS have fibro symptoms as well. Hityty (she posts here often) is also doing better. She sent me an e-mail recently.

[keblergirl]

please dont leave this fibro bord its all i have it makes me feel better to know that other ppl have the same symptoms i do to now im not crazy makes me feel better>!

[PlateletGal]

Thank God for the internet !  = )

[patsy10]

I'm not sure which website it is.....I found more than one.  Can you tell me which one to look at when I do a google search.  Thanks

[jenn38018]

I myself went to the neuro board first because these new symptoms I have been having are of the neurological type.  I have fibro myself, and am really starting to think I have CFS also.  My quality of life has really dropped in the past few weeks with these new symptoms, and I am glad to have found a board to talk with people.  PlateletGal actually told me about this board and gave me some good advice, so thank you.  I would definitely support a fibro/CFS board if it was started.  Are there any people in the Memphis, TN area that would be interested in starting a small support group for moms living and young women living with fibro/CFS?  If so, let me know, and maybe we could arrange something.

[alaskanmom]

I too have been struggling with many of the s/s of fibro and CFS. I was only recently diagnosed with the fibromyalgia after seeing a visiting specialist. Prior to my diagnosis of fibro, I had spent the last 5 years trying to convince doctors that I wasn't crazy and to look for the underlying cause to my multitude of symptoms... In the process I have now been diagnosed with sjogrens, mixed collagen vascular disease, and osteoarthritis of my spine and extremeties.

I have recently had an increase in problems with my heart, specifically palpitations PAC's/PVC's, which the doctors are now contributing to the MCVD due to a jump in my ANA over the past 3 months from 1:80 to 1:640 with no explanation!

I am still learning about fibromyalgia and what it means for me and my family but I am eternally grateful to find people such as yourselves who are willing to post your comments, questions and concerns here. It's nice to have somewhere to go where you don't have to worry that people might think your crazy when you tell them what's wrong with you! LOL

I fully support a new board that is geared specifically toward supporting the normal, wait... I am really starting to hate that word... the average people like us who just want to have their concerns heard and validated by someone else who knows what we're talking about... It would also be great for people like me who are newbies to this daignosis and worried about what it means in terms of treatment and lifestyle changes... I agree with jenn38018 about wanting some more information for moms and the younger generations dealing with this often overlooked illness. I myself currently have 7 children at home ranging in age from 15-1. I am constantly searching for someone who understands my frustration as a mom not being able to give 110% because of always being so run down... Jenn if you ever want to vent, talk, whatever, feel free to message me and we xan swap email addresses or something.

Thanks again PlateletGal for all your helpful insight in these forums... You are an invaluable resource!

PS, what is the Marshal Protocol???

[luv coast]

I think this is a Great tool. Because of this board I was able to get things rolling for me, I have been going to the doctor for 10yrs now...But after coming to this message board I decided to make a list of everything that I have ever felt and the list was 2 pages long...Now a lot of the symptoms were symptoms that my doctor was aware of but I guess complaining of 1 or 2 things at a time its easy for him to explain...The fatigue is my chief complaint but this flair up was like everything from the fatigue to the neck pain shoulder pain, back pain , pain in the elbows, legs, chest wall discomfort when breathing , headaches , severe menstrual pain , skin sensitive to touch, emotionally sensitive. I have for the past 3years had a positive ANA my doctor said that could from a number of things but never suggested to me to see a Rheumatalogist  he said we have to wait it out and see what symptoms services. Until this last flair up when I took my list to him...He also ran a lot of lab test to rule out certain things that can make me feel fatigue(diabetes,lack of potassium ,lack of B-12 ) every thing came back good He felt before he did the lab that I have  Fibromyalgia...So my next step is the Rheumatalogist . I can't work , I have to plan my life around my menstrual time because their bad, or a flair up...so its hard to make commitments because on a good day I say sure I'll be their not expecting for the day to come and I' battling a flair up.
So I think these message forums are Excellent tool I really appreciate them.

[begonia1956]

I just recently found this website, one day last week, after researching neuropathy.  Then I saw this forum for fibro. What a blessing. I have been reading all the posts and I hope this will be a help to us all. Maybe those of us who just read should post so that you all know we are here. i enjoy all of you!

[begonia1956]

Wouldn't it be wonderful if we had a chat room in this forum for fibro? Just a thought.

[PlateletGal]

I agree. I have CFS, but the two conditions often share many of the same symptoms and many CFS patients' end up with some fibro symptoms and vice versa.

I think the reason why CFS & fibro patients' are so outspoken online is because many of us spent years waiting for a diagnosis -- these conditions can be disabling and interfere with our daily activities -- some physicians' have totally ignored our symptoms and disrespected patients'...and many physicians' don't know much about these conditions and the majority of them do not keep up with the latest research.

This is a good place to share information to make sure that all of us are getting the information we need to make sure we are getting the best treatment.

[Grailhunter]

I am new, so I want to say Hi everyone!  I have a long post I put up there describeing my "stuff".

There is a couple of things I wanted to mention though, that I have been trying for about a month and a half.  The high dose Malic Acid/Magnesium thing is nothing new.  I just finaly started doing Malic after 12 years of this mess.  I have been doing Magnesium all along.  I guess I avoided the Malic because I was looking for a cure and didn't really view Malic as a part of that concept.  Ignorance, because as I am finding out, at least in my symptoms, it is helping.

I still believe that although these symptoms are so many and varied, that somehow there is a central issue.  If researched hard enough, it is a recorded fact that the first 8 diagnosed cases of CFS was in the 80's in Incline Village Nevada.  In the 80's I was a Plumbing and Heating technician in Incline Village Nevada, going in and out of countless residences.  Might be just a coincidence, but a couple of years after that I came down with something that was like a case of the flu from hell that hit me regardless of the fact I was taking 15 grams a day of Vitamin C at the time, and lasted for 3 weeks.  I suspect it was some form of Mono type virus and my energy levels and stress states seemed to be on the slow decline from then on, until the crash in 1995 and my mental and physical health has been a rollercoaster wreck ever since.

My personal belief is there is something at the center of this, and the reason they cannot find it is because for one thing, it is buried under onion like layers of other problems.  And it might also be because it is intrinsic and buried in what is considered to be a normal lifestyle in our age.  It doesn't hit everyone, because everyone is not made vulnerable.  But it is reaching epidemic like levels and that indicates there is something out there that is built into the system of modern life right now that is considered normal.

Enough of that.  I did want to mention as i did in my "my stuff" posting that I am trying out a new therapy on myself.  An awful lot of these symptoms involved in CFS and FM resemble something striking to me, and which seem to frequently evolve into other issues, like Neuropathy and Fibrosis, which are also striking in similarity.  The first is the concept of stagnation and the other circulatory problems and oxygenation.  So I am trying out the liver flushing routine which if anyone is interesting in looking at it, you can find countless pages on Liver Stagnation searches.  I am also pouring a ton of systemic enzymes into myself, which are "supposedly" supposed to do great things at restoring the heart and circulation, besides fighting inflamation and fibrin problems.  I noticed that allot of women with CFS or FM tend to have Fibroid tumor problems.  My sister has terrible FM and Nueropathy and she had a Fibroid the size of a grapefruit removed and about 20 more smaller ones.  I don't think this FM and fibroid tumor issue in women is any coincidence and maybe enzyme therapy is a option that could be allot of help in allot of different areas.

I will keep posting if the enzyme therapy and stagnation flushing seems to get me anywhere.  So far it is doing something because a whole bunch of skin problems that showed up about 6 years ago are almost gone since I started doing it.  Hopefully this is also impacting allot of stuff inside I am not aware of.

  

[PlateletGal]

I'm sorry --- I just now saw your question addressed to me. The Marshall Protocol is a research protocol that treats many conditions, including CFS & Fibromyalgia. The medications are not research medications and it is something that your physician could prescribe. If you use a search engine, you could easily find their website and check it out to see if it is right for you. I can tell you that I recently took a 2 week break from the protocol and got to see how much progress I've made. The only thing about the protocol that it takes years. To me, it is worth it.

[begonia1956]

I totally agree with your comments about something in our "today's" world that is causing this epidemic of CFS and fibromyalgia.  Did I mention earlier I also have rheumatoid?  Something interesting, I'll make a bet that everyone on this forum started with flu-like illness.  I had epstein barr infection for about 3 weeks, was terribly ill. I haven't been symptom free since that time in 1985.  On thing i want to note, I think fibro and rheumatoid (some rheumatoid's) are connected with infections.  I recently got a book about antibiotic therapy for rheumatoid arthritis. My dr was willing to try it on me, once he read the chapters I dog-eared for him.  I stayed on the therapy for 4 months before having to stop because of stomach problems.  Of interest, my fibromyalgia symptoms all but vanished.  Also, I had some female surgery about a year ago, prior to my surgery date I developed pneumonia. Not wanting to post-pone my surgery my dr gave me high doses of IV antibiotics.  I have never felt better in my life.  You all can research this if you want to, just google antibiotics for rheumatoid arthritis, you will find posts in there about fibro patients as well using this therapy.  I still go on the antibiotics if I'm planning a trip or a special occasion up and coming. Just wanted you all to know. I don't think it was an accident that both times my fibro nearly all but vanished while on antibiotics. What do you guys think?

[PlateletGal]

"On thing i want to note, I think fibro and rheumatoid (some rheumatoid's) are connected with infections. "

I agree with you 100%. You should considering going online and checking out the Marshall Protocol's success stories for both fibro and rheumatoid arthritis. If I remember right, one lady was 95% better after being treated on the protocol for RA.

[Grailhunter]

I got a positive Epstein Barr test also.  Which I guess in itself doesn't mean much since "they" say the majority of people will show antibodies to Epstein in their lifetime.  But maybe that 3 week case of hell flu was it.
I can see the Marshall Protocol working.  My gut just tells me its virus, pathogen, bacteria, something like that that keeps it rolling.  My fibro symptoms and fatigue have dramaticaly reduced in the last month and a half.  I have been taking huge amounts of systemic enzymes, which are supposed to have one effect of making virus's, pathogens and bacteria much more vulnerable to our own immune system killing them.  And I know I have had several episodes of die off sickness doing this.  Its costing me about 250 dollars a month to play with this high of a load of systemic enzymes.

The one symptom that is just driving me crazy though is this chest wall and sternum and inbetween the rib pain.  Its better, I can say that, but its the one symptom that is keeping me taking pain killers and muscle relaxers.  I went off them for a day to see if the enzymes would handle it alone yet, and it was a big negative.  My head and focus was sure clear though with the drugs out of my system for a day though and my energy level was normal.

[Curls]

Hi, I don't understand the question.  I thought this forum was the CFS/FM forum and living with it certainly could be one of the topics brought up.  Are boards something else?  It would be nice if there were an answer forum written by a doctor.  This illness has so much misconception and lack of information around it, that it could help.

There isn't enough activity here to post a whole another area for the topic yet.

[PlateletGal]

MedHelp just recently changed this forums name. I posted something like this in their suggestion forum, so now this is no longer the "fibromyalgia" forum only.

[ocelopili]

Do you folks know about the stanford clinical trial for Valcyte with Dr. Montoya?  He has cured a number of patients from CFS with this very strong anti viral drug. I have CFS/Fibro and very high antibody titer for HHV6, EBV, Parvo virus, and HSV. I do think viruses and a weak immune system in which more pathogens invade is at the core.  Perhaps because of environmental factors, peoples immune systems were weak and let the viruses in to begin with. In any case, I will be starting a 6 month treatment of the Valcyte in a few weeks.  People who have been cured have been very sick on the drug because of virus die off.  There are some very active forums for people with CFS/Fibro and also for people trying out the valcyte.  They are Prohealth, the HHV6 foundation, and Stanford Valcyte Trial forums.  It is very helpful to talk to other people with similar symtoms, especially when they find something that helps.

[PlateletGal]

Hi ocelopili,

I do know about Montoya's trial and had my physician check my HHV6 titers. If the protocol I'm on now doesn't work.... I can use that drug as a back-up later on.  I know the anti-viral drug he is using is very strong and he has to closely monitor all of his patients' and check their labs weekly. Dr. Podell has some information on this on his website and Dr. Mark Shaw has information on this drug trial as well. Since we can't give links, you can find Shaw's article by googling "What Causes FMS & CFS" + "Mark Shaw" + "Part 2"  --- it is the second part of the article.