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Newly Diagnosed
9 Replies
kerrygold - June 17

Hi everyone

I have been diagnosed recently with Fibromyalgia after years of associating my many symptoms with my blood disorder (Polycytheamia). My Heamotologist had been telling me my symptoms are not due to my blood disorder but always after having a unit of blood taken I felt a little better. My Heamo insisted I talk with my GP about my symptoms and he has deduced that I have Fibromyalgia. So now my question - does anyone else have Polycythemea or Erythrocytosis along with their Fibromyalgia.

Sorry this is so long and thanks for reading

Kerry

 

January - June 18

Hi Kerry, welcome to the site. I saw your other post under hip pain, so I googled polycythemia and hip pain, and checked out the site by merckmanuals. It mentioned that bone pain can sometimes be a symptom of polycythemia vera (there are different kinds of polycythemia, I don't know which you have). You might want to bring the hip pain to your doctor's attention and refer the dr. to his Merck Manual for more information on it. Apparently it's not a common symptom, but it does happen with that disease.

I've been on this site for about 6 months, and yours is the first polycythemia post I've seen - so I didn't think that disease was linked to fibromyalgia. However, I googled "polycythemia and fibromyalgia" and the first link is to a good article at the alternativehealthandhealing website. Here is what they say:

"Another condition that can be found with Fibromyalgia is polycythemia vera, increased number of red blood cells and total blood volume. This is not extremely common but worth mentioning. Thickened blood or hypercoagulation can cause pain. It also potentially increases the risk of cardio vascular events. Polycythemia vera is caused by either a dietary deficiency of B12 and Folic Acid, or can be inherited genetically. Correcting the vitamin deficiency is easy, and in the instances of inherited PCV, therapeutic phlebotomy or donation of blood to a blood bank, help alleviate the symptoms of this condition. The frequency of the phlebotomy or "blood letting", is determined by the amount of excess red blood cells, and is usually from every month when levels are quite high, to 3 4 times per year. I suggest that a complete blood count be checked every 4 6 months in people with PCV. It is important to avoid giving blood too often which can create an iron deficiency. Taking blood thinners like coumadin or even aspirin is not recommended except in life-threatening cardiac circumstances because there are many side effects and drug interactions with coumadin and even aspirin. Inflammation in the system can be detected by the blood biomarker C-Reactive Protein. Finding an elevated level, we can reduce the inflammation as well as the risk for cardiovascular events with proteolytic enzymes, eg Wobenzym N. Other indicators of toxicity lead us to the causes of symptoms as well. Toxic metals and gut conditions should not be overlooked."

Well, I learn something new every day! You don't say which type of polycythemia you have - genetic or other causes. And the site I quoted is an alternative healing site - which probably takes a different approach than Western medicine. But they do say that polycythemia can cause pain.

You don't really go into what your symptoms are - I mean the ones that lead to a diagnosis of fibromyalgia. Usually, they are: widespread chronic pain, serious sleep problems, exhaustion and brain fog -- but this is a syndrome and many other symptoms occur. It's not yet well understood what causes it - and the treatments vary considerably. What works for some doesn't work at all for others. If you read the posts under general discussion, you'll get a feel for how varied fibromyalgia can be!

I imagine you got a diagnosis of fibromyalgia because you are in pain - that's usually what leads to it. It would be to your advantage to click on the blue bars to the left, and read up on fibromyalgia and see if the symptoms sound like you. Also, read the general discussion threads. It's my personal feeling that fibro is being diagnosed in huge numbers these days, and that many different diseases are being lumped together just because pain is the common symptom. The problem is the usual (easy) treatment is with 1 of 3 FDA-approved drugs - these are antidepressants or anticonvulsant drugs and they affect your brain chemistry. They can cause serious problems in SOME people and often come with side effects. So if you don't need them, I would stay away. At least do some research and know what you might be getting into before you start them as they can be difficult to stop. However, there are certain types of fibromyalgia that appear to respond very well to these drugs.

Cymbalta (one of the recommended fibro drugs) made me very sick - and when i stopped taking it I had serious withdrawal symptoms for a long time. If you read the forums, there are many complaints about it. However, it appears to work for some. Likewise, regarding the above statement on alternative health - I went to an alternative MD, and I think his treatments, including enormous doses of Wobenzym, made me a lot sicker. I had to find another doctor.

It's really up to you - as a consumer of health care in our new system of overworked, HMO doctors - to educate yourself and advocate for yourself. Learn all you can about the conditions that may apply to you and don't be afraid to ask questions. It's important to find a doctor who will work with you and listen to you, and, as the Hippocratic Oath states: Do No Harm.

I have no idea if you have fibromyalgia or not. Perhaps this site can educate you about the common symptoms and you'll get a better feel for what your problem is. Wishing you luck on your journey. And thanks for your post, it educated us. Please let us know anything else you learn about the connection of polycythemia and fibromyalgia. Sorry THIS is so long! : )

 

Pikespeak - June 18

January, Thanks for posting this information! Although I don't have polycythemia, I do have Leiden Factor V, which is a hereditary blood clotting disorder. I take a baby aspirin daily. It was interesting to read that thickened blood can cause pain, which correlates with my glute pain and myofascial pain. Kerry, please read our posts on Voltaren Gel (Fibromyalgia Drugs). You might want to give it a try...

 

January - June 18

Hi pikespeak! How did you find out about the Leiden Factor V - I'm going to google and learn about it. You're lucky you can take aspirin! My little experience with antidepressants ruined my stomach to the point that I can't tolerate them at all any more.

and Kerry, make sure you read the post on Voltaren and check with your doctor before you try it, if you're interested. You don't say what kind of pain you have - this would be for inflammation type pain. It is an NSAID, and NSAIDs are somewhat risky in terms of cardiovascular problems. I don't think they understand exactly why yet… at least I haven't run across an article explaining it.

 

kerrygold - July 1

Hi January

My main symptoms are widespread pain which can jump from place to place, mainly hips, neck, shoulders and back. I have varying degrees of fatigue which I describe when it's really bad as 'deadly tired' I don't sleep much at all, maybe up to an hour at a time with spells of wakefullness and restless legs which when they happen don't allow me to sleep at all, I was awake until 3am this morning and then had to get up at 7am for work.

I also react badly to some smells, like perfume or paint fumes and some noises drive me to despair. Oh dear as I write this all down it sounds terrible.

My GP did the pain point test on me and it was agony at most points, I have been taking Amitriptyline with some limited success as far as sleeping goes but the restless leg thing remains a big problem, I am seeing my GP next week in the hope he can help.

Thank you so much for your interest, I am in need of support and I have found it on this site.

Kerry

 

ametrina - July 22

hi Kerry, I have both fibro and p. vera. I have had fibro since 1992 and p. vera since 2007.

My fibro acted up once in awhile. However, in the last 6 months or so, I have attributed how poorly I am feeling with poor management of my p. vera.

I have had terrible shoulder pain. It's new but I have had it since December. I have also been diagnosed as very vit D deficient which may be contributing to the pain.

My hematologist did not want me to have any vitamins....the thinking is more vitamins, more well nourished the more RBC are made. Bad advice.

Try another doctor because every doctor seems to have a different opinion about fibro and p. vera. Feel well!

BTW: one cannot donate blood if one has P. vera because medicine has not determined whether the bone marrow mutation that occurs and makes the definitive diagnosis of p. vera is caused by a virus.

I go to a major medical facility in the NYC area that's quite well known and the hematology department there tosses my blood away.

Remember, AIDS was spread by contaminated blood. They don't take any changes with P. vera because there is so little known about it.

Please get proactive about p. vera...for me, my disease was "managed" but the patient, namely me, was confused lethargic, in pain and feeling very poorly because of vitamin D deficiency.

The very best of heatlth to all.

 

January - July 22

Hi Ametrina - thanks for your very informative post! This is the first I've heard that polycythemia might be caused by a virus! I suspect that certain cases of fibromyalgia are caused by a virus.

Very interesting also that you had shoulder pain (many of us do!) along with confusion, lethargy, malaise and pain.

Just another piece of a big puzzle - and maybe this fits in somewhere - maybe some people who are diagnosed with fibro really have p.v. I am going to put some info on the general threads so everyone will get educated. Please feel free to put in your story there if you'd like. Thanks for educating us all! Good health to you.

 

ametrina - July 27

Hello all, What I meant was this: the cause of P vera is unknown, and what one physician says may or may not be accurate. I am told now that the reason why the extra blood is thrown away is because of abnormalities in the shapes on the blood cells. Truthfully, they don't know a lot about the disease. I experience a lot of pain when my hematocrit goes up and I believe that to be the amount of RBCs cause the blood to thicken. I am now following my own body cues as opposed to the appointment book of my doctor. Unfortunately, we must realize that the health care system in the USA is not a reliable source of information because rather than doctors saying; "I DON'T REALLY KNOW" and gaining credibility, they say stupid things that undermine it. EX: I asked my current hematologist if my improved state of nutrition is the source of my needing more blood letting. The doc said, "that has nothing to do with it!" Imagine folks, what you eat has nothing to do with your blood counts! After leaving the doc for my phlebotomy, a nurse told me (without me asking), "Don't eat iron rich foods like spinach and red meat, that makes RBCs"
..............duh, like I am a moron and don't know that? Some one should tell the doctor that. Please do your leg work. PLEASE! They don't know as much as they think they know and WE NEED TO KNOW THAT! For me, P vera affects my fibromyalgia tremendously. When my tissues start to hurt, my face will get red swiftly and that tells me its time to go in. I have never been wrong following my body's signals. A few months ago, my right shoulder was in agony again and I had bladder pressure. I saw my regular internist, asked him if he thought my race was red, he said yes. I went to the hema MD and my Hct was 45.3. Duh, its supposed to be 42 or under in a woman. I had a blood letting and in the middle of it my shoulder stopped aching and the bladder pressure went away before the end of the procedure.

 

January - August 9

Hi ametrina. Thanks for your recent update, and I hope people with P. vera see it! Thankfully, I don't have that! But I found your information really interesting. Your post may help others with P. vera to get a proper diagnosis and treatment.

Glad you are doing okay!

 

london and area fibro support - November 3

November 2014, London Ontario Canada. Hello everyone, a NEW FIBRO SUPPORT GROUP has now been formed.Anyone living in London Ontario and nearby areas are most welcome.

 

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