I'm interested to know if there are many FMS sufferers who have a RH Neg blood type. I have seen quite a few people on forums who have FMS and are also RH Neg. Does anyone know if there is a connection? I would be very interested to find out.
I have been diagnosed with FMS and also have a RH Neg blood type.
I have longed believed that autioimmune disorders are connected to rh
negative blood, and also disorders like adhd, add, dyslexia. There are so many people I have talked to that are rh negative with an array of problems. I also have cfs.
This is interesting. I am not really sure what type blood I have. I thought it was O positive though??? But I could be totally wrong. I've never been told since I was an adult. Does anyone know how you find out?
I had mine checked when I had surgery. I'm A positive. I had never heard about blood type and fibro link. It could be very interesting to look at. There is a book "Eat Right for Your Type." It outlines each blood type and what foods you should and should not eat. I don't follow it but it's interesting, most of the foods for A positive that I should eat make me feel yucky or I don't like.
I should have asked when I had my surgery done last year. Darn! Oh well. I am fairly sure my blood type is O positive. You know, I think I have heard of this book you mentioned.
I'll have to double check on my blood type though when I can and do some digging into blood type and autoimmune illnesses a little further. See if I can find any links? It's worth some research I spose...
Dustybrown, do check find out. You need to know for other reasons. I originally wanted to know because of the book. My sister and her daughters live by this book "Eat Right for your Type" it's also on tape. You can probably find it at 2nd hand book stores too. It's interesting. If you are O I think O blood type can eat protein where a A positive should limit protein. I can't digest steak or port very well. I eat it by not often. I am also very acidic so I try to eat foods that are more alkaline and that is why I always take an enzyme supplement before eating a meal. Also A positive types are more prone to stomach cancers and I have so many stomach problems so it gives you a heads up on what to watch out for. Take care!
I have a strong immediate family history- mom, dad and only sibling all have various autoimmune disorders. In the last 3 years, I have been diagnosed with psoaraisis and celiac- both auto immune. I am also Rh neg. To my knowledge, my mom and sister are positive blood types. I am getting testing done for MS, too- another autoimmune disorder. I really think there is a strong correlation with Rh negative and autoimmune in general.
Yes, I absolutely believe that it is connected. Just because a person is positive does not mean that there is not a connection with the Rh- because in my family alone ADD, ADHD, Dyslexia runs rampad, also pain issues similar to Fibro, but in different places, such as with myself and my son, sister, all who are negative. The 3 siblings in my immediate family, and the children of the negatives have all the above, the one family member who is positive is the only one that does not, nor does his positive children. Fibro, and CFS can be connected to connective tissue disorder, which I believe I have, but this can be a spectrum disorder, and I have about one of every symptom out of each of the spectrums, and have always had spells of just feeling terrible all over, and spells of severe muscle weakness. One of the other things I found in my searches is that there is a connection with ADD and CFS.I am A- and ADD, and have not been definitively been diagnosed with CFS, but have struggled for yrs with chronc fatigue, and other issues.It was finally determined that I had Hypothyroid, which never showed strongly enough on labs to treat me, but finally did get treated for it, along with estrogen and testosterone, and this has helped. But there are a lot of negatives with thyroid conditions. YES, I do believe it can be much more prevalant among negatives, and I am researching it.
Thanks for your post, I have concentrated on the negative aspect of the blood, and do agree of the negative being connected to autioimmune conditions, but there can be many factors, and is very complicated. I cannot eat red meat because it takes forever to digest and it is miserable for me because I was left with a chronic pelvic pain from a hystectomy, and my colon is exceptionally long, and when things don't move correctly I am in a lot of pelvic pain, but I tend to get weak and anemic from time to time and I crave red meat, but I am sorry if I dare eat it. Pork is not too bad, and chicken is not as bad, but fish digest better than any, but get tired of it, and I do need some meat. The easiest for me to digest is sauteed vegetables. What enzeme do you use and does it really help? I tried one a few yrs ago and it gave me a stomach ache, burning. I also have stomach problems, especially stress related, or any kind of aspirin, or anti-inflammatories.
Your family sounds like mine. From the research I have done so far it is the negatives of the family that have the problems. Both, of celiac, and psoaraisis are in my family.
I have spells of severe muscle weakness in my arms and ligaments there, but it gets better, but when I have it, it is difficult to even reach up in the cabinet to get a mug, or throw the covers back on my bed, now that is not normal. Am A-. What are your symptoms that concern you for MS? I had a test a while back for the autioimmune disorders, but do not have the results back yet. I do have Raynauds syndrome which is autioimmune, my dad had Buergers disease a vascular problem, lost both of his legs at age 40 died at 47. Buergers is also associated with connective tissue disorder.
yeah, Lynn, I am convinced there are some correlations with the negative blood, that's certainly not to say that as an absolute, but I've seen a lot of people on the negative blood website that have one of the related conditions. I think the very fact there are people out there noticing this and creating a web site about it says something in itself.
Have you had your thyroid checked? I had hypo for a long time before anybody would treat me, because of the old guidlines for labs, but synthyroid has helped along with vitamin D, which is very important, and I also use a compounded testosterone. Another thing that has helped me, which a lot of people seem to be ADD who have chronic fatigue, is a med for ADD, has helped tremedously. I know some people have an aversion to medications, but I am 60, and have been struggling with this chronic fatigue so long, I am just plain tired, and don't care, if I feel better I have no problem with taking something to make me feel better. I have done all the things you are suppose to do to be healthy, and I probably would be worse off if I hadn't taken care of myself, so I feel justified, and I am ready to feel better.
I had graves disease in 87/88. The only "cure" then was to take radioactive iodine. Which ends up killing your thyroid all together... Been taking synthroid for a very long time. No ADD. Trying to stay away from drugs as their "side effects" are sometimes worse than what the original problem deals out....
That's a shame about having to kill your thyroid, one of the dentist I worked with had to do that. She had always had an extreme sensitivity to scents, fragrances to the point of not being able to work, she actually got fired because she was aggravating the patients about it, and later I read that this sensitivity can be related to people with thyroid conditions, don't know which, hypo, or hyper. Yes, it is better to stay away from the drugs, and I think negatives are especially sensitive to side affects, it just so happens what I take agrees with me, and does help, and I have felt bad for so long that I am just glad there is something to help me feel better.
I'm 38 years old and have also been diagnosed with Fibro, I'm Rh Negative. I have often wondered if there is a connection also.... Recently I've been looking into the connection between black mold and Fibro. Some of you may find interesting. http://www.mold-survivor.com/fibromyalgia.html
I can't say for certain, but I believe an issue worth looking into regarding Rh negative blood types and ANY of the autoimmune diseases (CFS, fibromyalgia, MS) is the fact that Rh negative types are more like to have inflammation of the bowels. This is a condition that often goes undetected but can do severe damage to our nerves, organs, immune system, etc.. Using an elimination diet to identify hidden allergens as well as probiotics and gut healing nutrients has done wonders for my condition. Just another reason for those of us who may not be feeling well to thoroughly scrutinize what we put into our bodies. I hope this helps. :)
Oh, by-the-way kt, you are right about the inflammation and negatives, and you have to be concerned about vascular issues, and nerves like you say, because after my hyst I've had chronic pain in that area, along with neuropathy, and my dad died at age 47 of vascular disease, and he was not diabetic, but did lose his legs. The bowel thing can be connected to gluten intolerance, in my searches there is a lot of that with negatives, especially o-. I eat as natural as I can, with as little processed food as possible, but I haven't done the elimination diet so far. I admire you for the strength to do this diet because it is not easy, but can be very benefical.
I too have FMS and CFS with O- blood and have been wondering for years if there were any connections. I hope now that CFS is a hot topic that more research is being done, and a thorough cause for these diseases can be found.
By the way, in case you guys aren't aware, I recently tried to donate blood at Red Cross and those with CFS are now ineligible to give. As if we weren't depressed enough already? Hang in there, everybody! :-)
That is interesting that they won't take your blood, because O- is what they can use the most. Most of the research I've done, and I've done a lot, is that negatives are very sensitive in a lot of ways, seems the nerves are easily set off. My sister and I both (negatives) have fibro and other pain problems. I am convinced that autoimmune conditions are involved, and a lot of Arthritis. Too, O- seems to be sensitive to gluten, which can cause a lot of problems. Don't know if any of you have checked out the Rh negative blood sites, there are 2 that I go to, and one is RH negative autoimmune, and it is worth looking at, if you are interested. There are times when I really think I am spending too much time on this research, but then I think this needs to be brought to the fore-front because the medical community is clueless, and think you are crazy when you mention any of this. plus the ramifications to your family. There are some attention being brought to this subject it now, but chances are good your doctor has heard about it.
You can be positive, and negative, based on your parents genics. You may not even know there is a mix in the family line. It is pretty complicated, you can be -/+ or -/- based on what a parent passes down, and I still haven't had the time to really absorb this, wish I were a doctor. But the RH- autoimmune site explains how it is handed down. It is not just the blood, but it has to do with the genic makeup being different, the blood is just the tip off. Do you guys have brain fog? It varies with me, but some days are horrible. I've just started Lyrica, and it does help me. It is expensive, and it has to be pre authorized by my insurance, but you can get a Co-pay discount card from the doctor's office and that makes it affordable. Hope you girls continue your search on this, and continue to post.
Interesting question.I am type O, Rh neg and have fibromyalgia. My whole family on both sides are all O Rh neg. ( weird I know) My mother ,aunt, and some cousins all have it but no one on my Dad's side that I am aware of. They are also O Rh neg.It would be interesting to see if there is a connection.
I think it is now being researched, and there are a group of us on the RH negative site that I go to that are trying to push this with taking all the information possible from negatives. If you are interested you can go to RH negative.ning, I think that is it but you can just write in
RH negative and it will come up. The girl that started this first site has opened up another one called RH negative autoimmune. Lot of interesting information there.
I'm not sure who is doing what, it has been difficult getting the medical community on board, but the fact that so many people are noticing these different characteristics in their families should say something, and the fact that a negative mother will actually abort a positive fetus should say something, that alone is not done in any other species. But, the website can show places that are researching this, and these 2 sites are doing research trying to compile data to bring to the forefront. So I encourage any of you that have any time at all to please get involved with this so our families can be helped by this. I have been having autoimmune symptoms for yrs. my recent CT scan showed I have vascular disease, I am not overweight at all and my blood work comes back fine, but there is a vascular disease that is connected to an autoimmune disease, which my dad died from at the age of 47, and lost his legs at the age of 40, and he was thin a pole, and did not have diabetes. This really scares me, it is like being told you have cancer. I am 61 and just now having time to do the things of interest to me. My doctor doesn't even know this yet, I just went by and picked up the report before my appt., and this scan is for my pain doctor, and my primary care doctor will have to have this info to get me started with yet another specialist. But the web site is rhnegativeblood.ning, and if any of you think you may have an autoimmune disorder, there is the rhnegativeautoimmune. Please do your research on these problems, so we can help ourselves and our families, and future family members.
I am RH negative and have Fibro and other neurological problems. I had the RhoGam injection 3 times DURING my pregnancy. The reason...I conceived triplets and miscarried 2 of the babies, so doc felt it best to protect remaining baby by giving me RhoGam injections throughout my pregnancy. He is now in his late 20's but has been diagnosed with ADD/ADHD/Impulsive Disorder. Now I have problems, including autoimmune disorders. I am concerned that the mercury based preservative once used in RhoGam and many other immunizations, has played a HUGE role in my conditions AND my sons health issues. I want to know the link between the RhoGam AND Fibromyalgia. Not much info on the effects to the mother but plenty of speculation on the effects to the baby. SO FRUSTRATING!!!!!! Hope to get answers here or somewhere!
I never had RhoGam with my pregnancies nor did my older aunts and all of us negatives had children with the neurological problems. We have so many people in our family with ADHD, and autoimmune problems, it is all thru our family. I personally do not think it has anything to do with the shot, but that is just my opinion, there is a big controversy about whether it is the negative factor or the shot, but I am negative and am having all the problems you speak of, and so do my siblings. It is very complicated, and I do think the mercury thing is an issue, but I don't think it has anything to do with the shot, because we didn't have it and there is a definite pattern in our family of all these things. I could right a book on all the problems with our negative family. But, there is the Rhnegativeblood.ning that is researching all this, a lot of things to look at, I recommend it highly.
I have AB- RH- and suffer from CFIDS & Fibromyalgia. I have wondered for YEARS if there was some correlation between the two. I am posting this thread on FB as I am sure it will garner attention. It is interesting that the first post was early in 2009, and it is already mid 2011 and the thread is still going.....
i read each comment i to rhneg type o , have fib sence 1987 was told all in my head In 1992 a young doctor told me i had fib and send me to an nother dr. that conform it.the pain is so bad through out my body iwant to scream .I have been on lacia and cmybalta but neather help' I also have graves sence 1980 .And in2006 my colonbrok and have had surgeery after suggery for bad mash they put in so please say a pray for me as i go unnder the knife again to remove all the mash and fix a large herna . .also i was told that fibermyalga (fibromyalgia) could be past to your children like graves .I have a son and a daugher with gravea and a nother son with hypo why he is diffrent I dont know. my prayers are with nyou all..
I've just seen too many people with fibro and thyroid problems not to believe there is a correlation, and it may just be a negative in the family, again I say it is very complicated, because each parent has 2 factors they can hand down, it is just if there is any positive protein detected then it is considered positive. There are finally some research on this. I have a large family with a lot of negatives, and all the things mentioned here are in it, verses cancer or other conditions. It is like the body is in a war against itself. I just believe if there is any positive proteins at all, the negative person's body is trying itself to attack it. I really recommend you all to go to the Rhnegative autoimmune site, or just the Rhnegativeblood.ning site and learn more, about how it works, and there are still a lot of mysteries about it. And, as you get older it takes different avenues, different conditions. My dad was AB- and had a lot of problems, especially vascular disease, but he smoked and drank which really made it worse, so that is something you need to watch out for also. I am A- and just found out I have vascular disease, am 61, and have had a very good diet, and do not smoke or drink, but I have always felt bad, in many ways. Thyroid problems are very common in negatives, also and I think it is associated with fibro.
I feel so sorry for you, I know your pain. Sometimes when I have a severe flare, my body feels like it is being baked in an oven, burning all over, joint, muscle, and skin, you name it. My hands really hurt almost all the time. I did test for RA but they didn't seem to think I had it, but I am now convinced I do after reading all the info on it. I go to a pain clinic, and because the big creak down on narcotics, they have cut my meds way back, and I am really suffering from that. I have hypermoble joints which is connected to fibro, (I just learned that recently). One of the things that O- can have is celeac disease or sensitivity to gluten so you may want to check into that. If you are not seeing a pain specialist I recommend that. And then I had a hysterectomy that just has been a nightmare, I have had several surgeries for the complications. They debated about using mesh, but thank God they didn't because I have heard horror stories about it. My heart really goes out to you, and I hope you have a good doctor. All the surgeries exaserbates these problems, and I feel sure the thyroid has a lot to do with all this, and even though they can treat the thyroid problems, I don't think they are treating it completely because the thyroid affects a lot of things, and contributes more hormones than what they give you and it helps some symptoms, but doesn't just fix it. You will be in my prayers, and hope your surgery goes well. Please go to the sites I mentioned in the earlier posts about negative blood. keep us posted.
Yes, I am certain there is a connection. A-negative and the auto-immune connection. Me: fibromyalgia, rheumatiod arthritis. Been keeping close tabs on my A- blood type for many years now and all my health issues. The protein markers. HLA-B27. What a rabbit hole.
I couldn't have said it better. I am certain too. My doctor has been trying to find out what is going on with me, because my test are inconclusive. I show positive for RA in a low range, but have all the symptoms of autoimmune disorders, and that is a rabbit hole for sure. I have all the symptoms of Elers-Danlos, with the hypermoble joints, had a club foot, flat feet, musle weakness ligament, Rhynauds syndrome, burning, and inflammation, generalized pain. This is a collagen problem. I don't know if he has tested for the HLA-B27 but I do know that is one of the important markers. Do you visit the negative blood autoimmune site? Part of the problem is that you can have a subclinical situation which does not show up on test, but is really not recognized by most medical professions.
I am Rhesus negative, I had a threatened miscarriage with my, now 16 year old Son, I have endured so much pain in my body for the past 10 years and in the last 3 years especially, the pain in my chest, heart and lung on the left side is so bad that I am unable to lie down on my side to go to sleep. I have to be elevated. I have developed such a high toleranced to pain and try to manage my part-time back shift job around it all, but it is becoming increasinly difficult. I have had so many tests ranging from:- ct scan of brain, ct scan + dye of chest and abdo, ECG, heart monitor, endoscope, routine and extra bloods...I have had so many tests, especially over last couple of years as I have got older and more reclusive...I am literally not the same person I once was, and who wants to be as I simply do not have the same energy or drive or much needed tolerance to people and situations. I have looked at every angle, be it scientific, holistic, psychological, spiritual, psychicically; and have studied at college and university in subjects to back up my knowledge, however have been unable to finish my course because of ill-health, but have endeavoured to study in my own time over the years, thlerefore becoming my own muse...previous doctors said I could have fibromyalgia, others said I have a a abnormally low vitamin D3, this was unearthed reluctantly with a consultant in my hospital, who argued with me that fibromyalgia and leaky gut syndrome and everything that we all know exists, is a load of crap in his opinion, he said these things cannot be proven...he upset me so much and my gp told me "that I needed a kick up the arse", to which i reported him and eventually, after 3 years got a new GP who is much more sympathetic, but has suggested I be sent to pain management, because the previous cognitive therapy that my old GP referred me to undertake, still came to the conclusion that it was all "PSYCHOSOMATIC"...I understand the principle and theory of how the emotions can be detremential or positive to the body...of course these things are all true....but for goodness sake...the position that I and many others like me are finding themselves in as that something organic is going on and cauing so much friciton in our poor bodies that it is more than "imagining this constant pain and suffering and misery"...If you are in constant pain, then of course it is going to set you off your head and cause depression, anxiety, and all sorts of physical, mental and emotional burdens....I just want to get better and the whole idea that Rhesus negative bloods have a correlation with auto-immune diseases is fascinating and makes me want to start looking at foodstuffs and enzymes and all the things I understand and want to learn and hopefully be able to help me and everybody that is suffering...My pain is excrutiating...My son said to me "Mum, you've got to make pain your friend"...well I say to that..."It is...it's with me all the bloody time!"
I am so sorry for your pain, and believe me it is not all in your head!! I've been suffering so long myself, it gradually got worse over the yrs, (am 61)
I have had every symptom, and it just has gone from one place to another.
But, when I think about it I have had pain all my life, just didn't know that other people felt ok. I did see that they could hold up better than I because I always felt tired, and lots of time just wanted to sleep, and I could go on and on about all the different pain I've had, but right now, it is bone pain, and I have hypermobile joints which the Rhumatologist told me has been discovered to be connected with fibro. My hands are really bad right now, and have Reynauds syndrome, which is an autoimmune condition, and have tindinitis in my feet, part of that is overuse in my previous job, and have flat feet. Anyway, I would say your son needs a "kick in the arse" for saying to 'make friends with pain' that would be nice, but it is not my friend, and as well as the people who having been involved in your 'lack of treatment' but the medical field knows almost nothing about this stuff. I am SURE that the incompatibilty of the blood is involved with these mystery conditions.It is very complicated, but the person involved in the autioimmune negative blood site explained how both parents have two factors, either +/- or -/- and they can pass down one of these, and I can't explain all this to you but 'I believe that if you are negative, and you have some of the positive proteins in your body passed from one of your parents, your body's
immune system is seeking it out, as it hides in your body' now I know this may sound weird, but your body tries to attack a foreign substance. And, I think the negative human is different in general, it has to be because we are lacking this protein, and the just the fact that the mother will abort a fetus that has this protein. Rhogam changed natures system, and now the negative and positives are all mixed and are causing problems.I also think our diet is different, and much more sensitive to processed foods, and need more natural foods, and more sensitive in general.Check out the negativeblood.ning, and another one negativeblood autoimmune. I have ordered a book from National Geographic The Human Body, and in the brochure mentioned the some of the contents of the book, and one of them was about this very thing, I hope... that is what it implied. I hope it is what I think. Anyway don't give up, and get to a pain management you need some relief. I take pain meds, and I WILL NOT APOLOGIZE FOR THAT TO ANYBODY I am like you TIRED OF PAIN I also take Vyvanse which is a time released stimulant, and Hydrocodone, and also Lyrica and I have Xanx on hand for anxiety, which is always present with pain, but I don't like to take, it makes me tired. I still have pain, but I finally have a pretty good regiment that works for me. The Vyvanse and Lyrica are expensive, but I have a discount card for both and the insurance pays too, my co-pay is $25.00 and well worth it. I also use Elavil, an old cheap antidepressant to help me sleep.Keep pushing for some help, don't give up that someone will hear you. I will post a good article I found that describes how you feel exactly. Keep us posted, take care.
`This the article I was talking about
According to the journal article, “FM fatigue was described as an overwhelming feeling of tiredness that was not relieved by sleep or rest and is often not in proportion to the effort exerted (i.e. participants described becoming tired after doing very little). Many described their fatigue as 'feeling weak' or their body feeling heavy and almost all participants talked about having to force themselves to do things or described having difficulty getting motivated to do things. Participants differentiated between FM fatigue and normal tiredness by referring to the fact that FM fatigue limited them in doing daily activities or caused difficulty concentrating, thinking clearly and/or remembering things.”
The study found that the key elements of fatigue in FM from a patient perspective are:
An overwhelming feeling of tiredness.
Not relieved by resting/sleeping.
Not proportional to effort exerted.
Associated with a feeling of weakness/heaviness.
Interferes with motivation.
Interferes with desired activities.
Makes it difficult to concentrate, think clearly and remember things.
Although the conclusions of this study are nothing new to those of us with fibromyalgia, I was glad to see the fatigue of FM studied, described and published in a medical journal because too many people – some doctors included – think of it as just being tired. The fact is, there is no word (in English at least) that adequately conveys the depth of fatigue that accompanies FM. Exhaustion comes closest but still doesn't quite explain it.
I've described the fatigue of FM as feeling like someone has pulled my plug. It's as if my source of power and energy has been cut off. Another analogy might be made to power steering in a car. Have you ever tried to steer a car when the power steering wasn't working? It takes every bit of strength you can muster just to turn the steering wheel a couple of inches. When I am having a flare and the fatigue is at its worst, it takes every bit of energy I can muster just to do the simplest task, like take a shower or make a sandwich.
In some ways, the fatigue of FM can be more disabling than the pain. While we can push through the pain (to a point anyway), when the overwhelming fatigue takes over, there is nothing left to push with. And unfortunately, just getting a little extra rest doesn't help. In fact, sometimes we wake up feeling as bad or worse than we did when we went to sleep.
I would check and see if there is any negative blood in the family, because each parent has two factors, and a person can be predominately negative, but if any positive antibodies are detected in the test, it is considered positive, and if either parent has a negative factor at all it can cause the incompatibilites. I know all this sounds complicated, and it is, and over the yrs it has become more and more complicated because the Rhogam shot changed everything by altering the way nature takes care of these things, but it sure sounds to me like there is an incompatibilty somewhere in your family, with all that going on. Do a little asking around. A lot of people don't even know their blood type. You really should check out the negative autoimmune web site, and the negativeblood.ning. What you describe with all your family members are classic negative blood incompatibilites.
I bet there is some negative blood close by, and even if it is not you are your husband it can disrupt genes or DNA if there are others in the family with it. I can't explain it all here, and don't even understand it all myself, but I am sure in my heart that it is very relevant to the immune system, and more sensitve nervous system, and I believe it will eventually come out in the medical world. I am really sorry about all your family members with these conditions, my family is similar.You may not be interested in these sort of medical subjects but it totally fascinates me and I am going to continue to research it. I can't talk to many people about it because they are not interested in this, and my brother who is the positive one in the family just rolls his eyes if I even mention it.But, I think it is important for the children coming up. My son is 35 and is struggling with same symptoms I started with at his age, or younger, and it just continued to move around and get worse. Thank goodness I have taken care of myself and tried to eat healthy. But, I am in a lot of pain, can barely walk to the bathroom in the a.m., but I take my meds and drink my coffee in bed and wait to get some relief so I can do something.
i find the info very interesting. Only problem is i couldn't find any info doing searches when trying to bring up rh factors and fibromyalgia. Probably cause the medical world thinks its nonsense. But it totally makes sense to how it could be possible. I to am in a lot of pain especially my legs and back. Doc has me taking savella 50mg daily started on the 25mg 12 days ago. And i get injections in my back that doesn't help. The fibro fog is really bad im positive i failed my mental exam for ssi even though i have a iq of 127 :( i also have weakness and burning and muscle spasms. My problems started off with the muscle spams and continued to get worse. Also get charlie horses in different parts of my body. And so many other things seems like everyday i could add something new to the list its crazy and sad.
Well, the problem with all this is that nobody is connecting the dots, and unless you have propensity to these kind of things, you are not going to pick up on it, but I have been researching this for yrs. and it really makes a circle with the negative blood and these issues, such as fibro, thyroid, and almost all of the autoimmune conditions. Now in my case I have hypermoble joints, which means my joints are very loose with the ligaments not being strong and holding the joints well, so they flop around in there and cause inflammation and wear wrong. Actually I have some of almost all the autoimmune conditions, The one I am closest to is Elers-Danlos disorder which has to do with collagen weakness, meaning the ligaments are weak. But, I can tell you now, the medical community IS NOT up on this, at least not yet, so you have to do your own research. The web sites I mentioned is a good start. One of the things that is so bad is the neurological problems which is the burning, I am having as I speak, my legs are particularly a problem, and because of the Elers-Danlos thing my feet are flat, and my whole bone stucture is off. But, my hands burn, my legs burn, and to make things worse I have genital herpes which really sets off the nerves, and I am having that now. My legs are hurting soooo bad, and I actually hurt all over when I have this with the herpes. Warm weather really helps me, and where I live it is getting cold, and I have Reynauds syndrome in my hands, and that is horrible in the winter.The brain fog is terrible, because people can understand the physical, but when it comes to the 'thinking' they just think you are dumb or something, and it comes and goes (mostly goes) and it is so difficult to keep things straight. Thanks for bringing that up, because it is a real problem. I better go, but thanks for staying in touch, it helps to hear from others. My heart goes out to you.
Hi, again it's late, 4.00am here in Scotland, and I'm up because when I lied down to sleep I am in so much pain in my chest, I feel like my heart is being squeezed and the pain goes through my stomach, down to my groin and down my leg to my toe, this happens every night, I dread going to my bed more and more. I am so exhausted and drained I just want to fall into a deep sleep where my whole body feels like it's rested, this only happens to me once in a blue moon, especially if I have had 2 or three nights of sleep deprivation and have not ate certain foods. I have tried the elimination and introduction of food stuffs, but I always revert back to my craving for starchy foods and sweet things. I feel at the end of my tether tonight, I have no motivation and feel quite depressed with this quality of life! My gp's just don't know what is wrong with me, I have not been to see a doctor for months because I just fear they will send me away again and still not have any answers for me. Sometimes I feel I can't go on with this anymore. I am sick and tired of feeling exhausted and in constant pain, burning, aching, throbbing, sickening, stabbing, piercing, palpitations, feeling like my heart is going to give out on me, forgetting things that people have just said to me, my short term memory is getting worse, I have constant headaches, I think the worse thing for me is the fact that I can't sleep properly. The only medication that I am on just now is Amitriptyline 25mg for nerve pain, which is supposed to make me sleep, Omeprazole 40mg, for my stomach acid, and Ibuprofen and paracetamol. The doctor had me on Diclofenac 50mg but they made me so constipated and the surgeon in the hospital told me to stop taking the diclofenac and start taking 75mg of aspirin per day instead. I am confused and need help. Also, I used to take antioxidants and magnesium tablets, but have not took those for about a year because my GP said not to because an alternative therapist prescribed them for me!!! I am thinking of going to private health care to see if I can get better results. I am looking into the 'Eat right for your blood group'...I too am killed with pain in my chest and stomach and spleen area when I eat red meat and certain other foods! Sorry I have went on and on! Thanksgiving, thank you very much for your expertise and advice x
I am so sorry to hear this, and yes I know exactly how you feel, but I do have the meds that hold me up, thank God! Red meat I just can not digest, at least for days, so I stay away from that,even though I feel I need the protein, and the other things it provides. At first I did not know that all that you describe is all the symptoms of Fybromiagia. Usually, they talk about certain parts of your body that hurts, but I hurt all over, and burn, and some days it is not very bad, and other it is H----! And yes, I have read hr. upon hr. about all the different things concerning all that we have talked about here, including Magnesium. My memory comes and goes, sometimes it is better than others, and I do think it may have to do with foods, but I basically eat the same foods, and I eat well, as far as a good diet, and I drink plenty of water. I take Amitriptyline 25mg. but I also take Lyrica,which has caused weight gain, but it helps a lot, and I take 4 Hydrocodone, of 10-325 a day plus I have a script of 1 Oxycodone a day, and I just take double on the days I need and none on the days I need it, but the MS Contin, which is time released does help, which I have had in the past, but because I changed dr.s started all over, with the lowest dose. Anyway, I think there has to be a virus, or bacteria, or some kind of autoimmune disorder that causes this. I have spent a lot of time looking into having RH negative blood, and even if you don't have negative blood, if it is in your family it can cause problems. My heart goes out to you because the doctors don't have a clue. Don't feel bad about going on and on because I have been going on and on for over 10 hr.s now. And, it is funny that the memory thing is involved in all this, because I have problems with this now for yrs. Research Fibromyalgia, and you will see a lot of the same symptoms. I am A negative blood type, and I think that is one of things that causes some of the problems we have. I have to go, sorry, I didn't have time to read over this to make check mistakes. Write back anytime, I know you pain.S
I'm back, and wanted to proof read what I wrote last night, and it needed some things, as I suspected. One is the meds, I take the Amitriptyline only at night, and I skip the Oxycodone on the better days and then double up on it when I'm having a really extra bad day. And one of the last sentences didn't make sense about checking for mistakes, anyway I guess sometimes the body just goes haywire. But, I have felt bad on and off my whole life, even as a child, I just didn't know everybody didn't feel this way. I think the endocrine system has something to do with it. I know this is going to sound crazy but in the research I've been into with the incompatiblity with the RH-blood is this; Most people know that an RH- mother carrying a positive fetus, a child with the D protein, I believe it is D, the mother will try to destroy if she has been sensitized to this protein, and this is not an absolute fact, but I read this, and it makes sense to me, but a lot of negative blooded people will end up with some inherited positive proteins that are alien to our genetic makeup, and it causes the immune system to become hyperactive and a number of other problems simply because these bloods do not match. Of course people can certainly have problems like ours without this being connected but I've been in touch with a lot of people studying this and so many of them have these exact problems and the doctors are mystified on what is causing the problems. I didn't realize until recently that Fibro can start off with extreme fatigue as if one is coming down with something, which I've had for yrs. I never considered fibro as my condition because I did not have the standard
trigger points, or places of pain. All, this really ramped up after my hysterectomy 10 yrs ago, and had complications with that and nerve and muscle damage. But, it really does make it bad when you struggle to keep up and nobody understands, and I just don't really care anymore, and I take my pain meds, and make NO apologies for doing so. I feel so bad for you, and this business of having pain high in your chest means something is wrong, lying down is the only time I get relief? And, how in the world do you tolerate aspirin? I am severely sensitive to aspirin, you talking about a belly ache now! Some people, maybe you, can take it without problems, but it will burn your stomach up after a while. Ok, lets get to the bowel thing, I know you mentioned constipation, so have you been chronically constipated? A lot of people do not take these bowel issues seriously, but I do, it can make you feel horrible when that is not right, the bowel is a very important organ. I just heard a story about a woman having some kind of horrible pain, forget exactly what, but the doctor did an x-ray and she was impacted higher up. But, I make sure this is under control by eating a lot of fiber, like fruit, nuts, mostly a vegetable diet, and red meat messes me up for at least a couple of wks, drink lots of water but most of the time I drink a high fiber flakes with about 5 grs of fiber, these little old capsule (I finally discovered) are about 1 gr., but I mix Miralax with this, most every night especially if I have not had much fiber during the day. Miralax is expensive but they do make a generic and it works, but the main thing is regiment, regiment, regiment. I have to because of the meds I take, and being on meds particularly makes you feel bad to be constipated because of the build up of the toxins in them.Plus, the problems I have now from my particular condition, being pelvic. I also make a drink in my blender of fresh pinapple, apples, grapes, ginger, carrots and a couple of leaves of Kale, and a dash of honey if needed, but usually you don't, I also do use a little of some kind of juice, but grape juice is not a good one, cranberry, or orange is good. I do it in the blender because you don't lose the fiber that way. I have a juicer, but I think it is better to keep the pulp in it, and it is a little thicker, but I love it and it is just about a meal, especially if you add yogurt. You also may have a Gallbladder problem, or an infection somewhere, but you really need to find a good doctor to figure out this thing. I hope some of this helps. I have spent yrs researching all this stuff, but there are several areas of the body like the heart, I don't know much about. The other thing is the Thyroid, many people have pain issues because of this, and a lot of time the doctors will not treat you for Hypothyroid, if it is subclinical, which mine was, but even with a small dose of synthyroid helped me when finally I found someone who would treat it. Thyroid also affects your memory, big time. Anyway, I've said enough.I do hope you get some help, I know the desperation, and isolation you feel, my husband has not been very understanding that's when I turned to the computer, and I have had to diagnose everything I've had. But, seriously, you need to get some kind of scan for that pain when you lie down, you could have some kind of tumor or something. Keep us posted, you're in my prayers. Forgive me if I repeat myself here on this forum, sometimes it is weeks or months since I've read yours and my replies, and I just read yours way up there, and got a lot of the answers I was going to ask, and i did see that you have scans, and if they can't find something I would definitely try to find someone to give you ENOUGH pain meds! I know it is difficult now here in the states because of all the abuse on the streets don't know how it is there, but you need something to give you some kind of life. I am finally on a regiment that at least gets me by, and I do have somewhat of a tolerable life, but I am propped up on the meds, and they don't make me drowsy or anything. I do take Vyvanse which is a timereleased stimulant, a small dose, and that was a life saver, but it does scare me to think I couldn't have it, I would just have to lay down I guess.
Keep us posted.
How did you find out you have EBV? I had some tests results that came back very high for it. The test was done because of all the chronic fatigue, but I never went to the infectious disease ctr. and one of my doctors just said 'almost everybody has had mono, and those tests didn't mean much', but to me it looked like the results showed positive for it being active. The test results are difficult to read, and one doctor thought I needed to get it checked out. I have fibro, Rhumatologist said that this goes along with hypermobile joints which I have, and I believe I have Ehlers-Danlos which is one of the symptoms of the hypermobile joints. I have all the criteria for that condition. It is a collagen problem.
I have been diagnosed with FM and CFS since 2006. Both have gotten progressively worse. I cannot work anymore or carry on with daily chores. I have been taken several medications like, Savella, Lyrica, Hydrocodone, Trazodone and Baclafone. Just to name a few... the list goes on and on! I feel like a Zombie most days but have to start living my life before I loose it. Oh, by the way I am only 43 Years old! I have read all the post to this discussion and also believe that RH negative blood may have something to do with FM and CFS. I think someone should do a thesis on this! Both my parents had RA and I believe my mother had RH Negative Blood. She was diagnosed with Lupus at a Very early age, like 20ish and she passed at the age of 61. My son has the same signs and symptoms as we all do, and was born without a immune system and has been fighting viruses and illness all his life. He has had Singles 23 times and he is only 21 years old. I might Add That this Forum is Amazing! Thanks to Everyone who has submitted their stories, It has helped me greatly. Blessing to ALL!
Here is a place you can get some answers to these issues,
http://www.rhnegativeregistry.com/autoimmune And another one that is just the site for negatives that is good is
rhnegativeblood.ning.com These are great web sites, and I could be wrong but I am ABSOLUTELY convinced that there is a connection, all this stuff is in my negative family, and I have been studying this for yrs. It sounds like you are really struggling, and I am so sorry about that, my heart goes out to you. It is important that people like you be pro-active in researching this and giving feed back where ever you can because the medical field is just not with it, although there are some places that are actually looking into this. A lot of people who have hypermobile joints, as my self, have Fibro, and the Rheumatologist told me this, but I believe mine goes even farther and have Ehlers-Danlos which is a collagen problem, that weakens the connective tissue, ligament, tendons and muscles. The place to get the answers is a Geneticist. Most Rheumatologist are not to good in this area.
There is another site I go to which is called *********** which deals with a lot of things you speak of. Contact me any time.
Thank you so much for the information. I never heard of EDS till this forum mentioned it. It is something I need to look up on.I often wondered if EDS is something my Mother had along with the Lupus. Guess i will never know, but will wonder about.
I will be seeing my Rheumatologist this week, and I am going to be asking her a lot of questions EDS being one of them. Have you ever tried Lyrica, My Rheumatologist does not want me taking it because its side effects are wait gain. Guess maybe I'll weight more then 140 pounds ....with my decreased appetite I don't think its going to matter.
Well, thanks again for the info. and I will be back on here soon. I only sleep a few hours last night so its time for a nap. It seems like sleeping for me is a thing of that past. What about You? Hope your having a good day.
Hey, I am in a hurry, so will get back later, but from all I have read (many yrs of research) there is an overlap on this stuff, and sometimes the Rheumotologist are not too good with this stuff, I am going to a geneticist for the final answer. Keep looking, yu are on to stuff, like I say my husband is saying "Let's go" will get back.
I am A- and am ADD, think I have Ehlers-Danlos, hypermobile joints, hypo-thyroid and most of my family have one or the other of ADD, ADHD, Bi-polar, vascular disease. I do think that negatives are more prone to these issues. My brother is positive, and so are his children, and neither of them have these things. It is very difficult to get medical people to look at this, and it is very complicated and involves more than just blood. I believe that the negative blood is just an indicator of a lot more. Keep searching. My son is ADHD and he has really had a struggle all of his life with various issues. Hang in there and let us know how things are going.
Hi Thanksgiving, how are you? I have not been on this for a while, just quickly on to say thank you for the last post and advice you gave me, I am in so much agony, the pain is getting worse. I am still waiting on the pain management team to contact me, it's been a while since I was last at my GP, she has resigned herself to the fact that this is all in my head. It makes me feel like screaminng at the doctors that I am not insane but I will go insane if they continue to fob me off. The pain is constantly burning in my chest, expecially after I eat. I am going to try cutting out all the carbs including, bread, cookies, cakes, certain fruits, crisps (potato chips), also, certain meats and cafffeine. The list of all the foodstuffs you listed that you have sound yummy. I think my symptoms flare up and are certainly worse after eating, I am sorry if I am repeating myself. I started a new job a month ago. I am a lab technician and there are a lot of things to learn and remember, the thing is, I keep forgetting things that I have been told, and I am scared to mention to my new employer the extent of my fatigue, pain and memory problems.. I had the opportunity to include all of this information when I signed the contract and occupational health questionaire, but I didn't because I was afraid I would not get the job. I am looking into all the links you gave me and others that I have seen on this regarding Rhesus negative, auto-immune diseases and fibromyalgia, I will take your advice and look at the mononucleus. I fear every night when I am propped up like a wee old lady in my bed (I am 39), that I will have a heart attack and die during the night, I keep telling myself that I will survive,m because the doctors said that there is nothing wrong with me.... I also remember when I was doing my studying at college and brief time at university, that when people have overgrowth of yeast in their body, the spores can attach themselves to other organs, for example the heart and the lungs, and when we feed the organisms with their foodstuffs they need, such as all the ones that I should avoid, then they will continue to grow and give off toxins into our blood, which causes the pain and burning and aching and fatigue....these organisms apparantly are not shown up on scans and xrays as they do not have endosceletons, could you maybe confirm this for me? Anyway, i will have to go as I need to get up at 7.30am and it is now 01.12am in GMT, London...Good night and thank you and hope you and all our fellow sufferers get through another night. I will be in touch soon x
I also have RH neg blood type, and was diagnosed with CFS following a strep throat, and flu shot....this was years ago, and now I have severe chest pain, anxiety and was hospitalized...only diagnosis doctors could come up with was severe indigestion......yet my chest muscles are weak, and still sting and burn..I feel like I have the flu.....bummer.
I am also RH-. Had the "shot" after first child born. Developed fibromyalgia,
a few months after second child born. For 18 years have been dealing
with fibromyalgia, chronic fatigue, tmj, endometriosis, gerd.
Have recently developed raynauds real bad this past winter.
Also have recently developed longitudinal melanonychia in fingernails.
Dr. says low vitamin D. Had complete blood labs done. Everything good
except vitamin D a bit low. It was at 25.
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