SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
sorry I've been absent horrible pain now it is fibromalgia
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
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sorry I've been absent horrible pain now it is fibromalgia

well the last doc said neuropathy  but he did so without any tests, I insisted with my outside voice that my damn (sorry) doctor find a specialist, I did some research and found one to take my state insurance....it seems I have fibromalgia...now the med she wants me on is cymbalta which does not mesh well with my blood thinner therapy...so here we are all messed up again...at least I have a diagn. now and my lawyer said with a diagn I can get my disability finally, I haven't been able to work for a year, I would almost perfer the neuropathy to this but we deal with what we have to don't we!!!
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6 Comments
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1627868_tn?1333889942
I am sorry you are going through all this.  I, too, have a dx of fibro in addition to MS.  I have some good info on fibro because I found one of the best docs around.  I want him to be my only doctor for anything, lol!  He said he would love to and will do what he can but there are certain things that he is "unqualified" to do.

My mom also has fibro and just got her SSI last summer.  She went through about 3 years of denials and appeals before she got a lawyer and went to trial in front of a judge.  The judge granted her SSI immediately and actually commended her for being such a hard worker and upstanding citizen for all her work years.

Ask your doctor about Savella.  That is what I'm on.  My fibro doc said that there are three drugs used for fibro.  Lyrica, Cymbalta, and Savella.  Cymbalta and Savella are fairly similar but work differently.  Savella works well for me.  Lyrica is more for neuropathy associated with fibro, Cymbalta is more for depression, and Savella is more for pain/fatigue.  I still struggle greatly with the fatigue, but was told the fatigue is more due to the MS.

My fibro doctor also said there is a "holy trinity" of drugs that they use for fibro...Tramadol to help with the pain, one of the three fibro drugs listed above, and Nortriptyline.  The three of these drugs work in combination to help with the all the symptoms.


Has your doctor recommended anything else besides just the drugs?  PT and OT are very critical, in my opinion, to help you learn optimal functioning as well as other things to help control your symptoms.  The doctor I found has a whole fibro program that you go through.  They all teach you different things to keep the pain at bay and to function as normally as possible.  PT has taught me a lot of different stretching exercises which are important to do at least once per day.  OT teaches you things like the importance of your diet, relaxation, and different ways to do everyday chores to conserve energy, etc.

I hope you are able to find the right combination of things that work well for you to keep your pain at bay and help you function at the best of your ability.  Let me know if I can answer any questions for you.
Sarah
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1917408_tn?1329427500
I am glad to hear you have a Dx that will allow you to move forward with your disability. I have been off work since October. Disability income will be a welcome relief compared to NO income!

Valerie
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551343_tn?1350880995
Yes i agree with Valerie at least you can claim disability now.

Fibro is a horrible disease. I have a friend who is bed ridden with it. She is on morphine, sadly given up. We have tried to explain to her like Sarah said that she has to get up and exercise, to help the pain, but she wont listen, so she just lays in bed, smokes and complains about the pain.

I think a lot of people with illnesses like MS/LUPUS/RA have a degree of fibro, and I am convinced it is part and parcel of same diseases overall. Although its possible to just have fibro, a lot of people i have spoken to have been diagnosed with both.

There are lots of drugs for it, that shouldnt effect your blood problems.

By the way swimming is excellent for fibro, especially in a warm pool.

Big hugs...mariax
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4173379_tn?1355360151
Hi, greetings to all... couldn't help but find interest in your post regarding fibromyalgia, and your definition of it being a "disease". That unfortunately is a common misconception among some who have been diagnosed with this syndrome. I am quite interested in this condition as recently my husband was diagnosed with hereditary hemochromatosis (HHC) in the last month, so in order to understand this disease of HHC, I have become very informed so as to know what to expect. What I do know is that the dr community have little to no understanding of this common yet rarely diagnosed disease and in doing so many patients with the complications and damage from HHC are very sick and dying. There are a mountain of symptoms to do with HHC including arthritic pain in the joints and muscles, diabetes, heart failure, liver cirrhosis, liver cancer, hypothyroidism, hormone issues for men and women, fatigue, exhaustion, internal hemorrhaging, and many more common ailments, all rooted back to HHC, which causes iron to be stored in the body's tissues, joints and organs rather than being excreted by the body. Dietary iron overload is the leading cause of systemic disease in people who for genetic reasons load iron.

I strongly urge all people who have strange blood tests to do with elevated liver enzymes or other unexplained symptoms that your dr had diagnosed as fibro or osteo arthritis and many of the other ailments associated with this genetic disease found predominantly in Irish Scottish Welsh and northern European backgrounds to ask for the simple blood tests to be done to see if indeed iron is to blame. It is a silent killer.

The blood tests you need to ask for are ferritin, tranferrin, iron serum, TIBC, iron saturation and for the liver get ALT, AST, and GGT tests done.

Good health to you and your loved ones, all...cheers.
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I just joined this system and obviously have lots to learn. I think I finally found the right base for me to work from. Each symptom mentioned before I have, in combination of all of the different findings I have been given.

I will definitely write down the list of test you listed.

Thanks for a new beginning to the truth!
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4173379_tn?1355360151
HI there, I am also new, and I have read through many of the posts from ones who are suffering through various ailments, disease and conditions. All I know is, until my husband actually received a diagnosis last month, we were in the same boat as many here find themselves...increasing severity of unexplained symptoms. Blood tests initially were coming back "normal" early on, yet as time went on there were obvious problems the dr just wasn't getting. Our frustration was growing.

THen we found out he had Hep C. It had been on his file for two years, without the dr telling us. So first thing we learned is that you can't always trust the docs to be in your corner and be looking out for you. You just a number in a file folder.

The second thing we learned is that in spite of abnormal blood work, most predominantly the liver enzymes elevated, and retesting over and over and without alcohol (not a heavy drinker, but occasional) the doc only focused on the elevation as being attributable to alcohol, and since learning that there are other various reasons liver enzymes are elevated, one being hemochromatosis, and over a long period of time of your body storing iron, it leads to liver damage first, like cirrhosis and liver cancer. So during the course of action with new internist regarding the Hep C and trying to figure out the genotype for treatment plan, they came across the hereditary hemochromatosis, a mutation on the HFE gene that is responsible for iron storage in the body.

My husband found out he is compound heterozygous, meaning he has a copy of the C282Y and H63D mutation. His iron storage is not as severe as if he was double C282Y, but put that disorder along with Hep C, and whammo. Iron does horrible things in our body, among them being that when we reach the critical mass in our body that we need, which is NOT much, it begins storing it, and what cannot be bound becomes free radical in our body. Cancer and bacteria and viruses need iron to thrive, so free iron ends up binding or being absorbed by cancer cells. I came across an article last night from Dr. Blaylock on the relationship with iron and cancer, like breast cancer, and it said that 88% of breast cancer patients have elevated iron and the cancerous breast has 3 times more iron in it than a normal breast. Colon cancer as well, iron is responsible for cancer in certain parts of the colon.

On top of all the cancer risks with high iron, we then have the organ damage. Iron loads first on liver and heart with liver damage obvious as the person gets older without this condition being detected. Many docs have discovered the cirrhosis first and have told the patient they are alcoholic, even if the person denies drinking, they then are told they are closet alcoholics!!

The heart is the next most affected organ and iron loaded onto your heart cause arythmias, heart palpitations, irregular heartbeat, enlarged heart, and any other name your dr wants to tell you to do with the electrical conduction and ends up causing congestive heart failure in the end.

The pancreas is next, with damage to pancreas causing diabetes.

Spleen can be enlarged. Many have had spleen out.

Gallbladder, many have gallstones and end up with bile duct blockages and serious conditions that are realted to the pancreas and liver bile ducts. Many with iron overload have had their gallbladder out.

A patient first presents to a dr with what feels to be arthritic pain in joints and overall body pain. Sometimes debilatating. Nothing can ever be found and the standard tests come back normal. A person continues to suffer, with pain in hands and particularly fingers, wrists, shoulders, knees, hips, and intererestingly, the two most common joint replacements in people with HHC or iron overload are the hips. More often, the dr diagnoses someone with fibromyalgia or osteoathritis, as they have no other answers. Research on hemochromatosis took me to a site and I began reading the information and it turns out it was the Fibromyalgia web site, and on their own site it says that many people diagnosed with FM are finding out they have HHC!! The symptoms are so similiar. So many thing related to iron overload...Parkinson's, Lupus, MS, and even anemia. Yes, a person can be anemic and iron loading at the same time...

Another very common issue to do with iron loading is IBS and other intestinal disorders like colitis, as well as polycythemia vera. Iron is absorbed by the intestines.

I have so many other things about this disorder wrapped up in my brain, and it's hard to write them all down, I could go on and on...manifestations on the skin, ocular (eye) manifestations...myt husband also had been diagnosed with a "rare" eye disorder before he found out about the Hep C and the HHC...in which his vision is failing due to retinal hemorrhaging, no treatment, no cure. It stems back to, now as we research root causes, to iron loading, and pancreatic damage, as it is found usually in people with diabetes.

So, I know there are so many questions, I can help with specifics if you like and I have many articles, studies, and pages saved and bookmarked, as well as info on testing and treatment for iron overload.

It is well worth looking into, as it runs in families and the results are devastating. It is common and medical community ignoring or uneducated. We have found this out first hand and all the stories of people with this diagnosis are the same. Years to diagnosis and several drs later, they are getting answers.

Take care, best wishes...
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