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Autoimmune disease, neuropathy, migraines - no answers! HELP!
Hello,
I posted here a while ago and I'm still in Limbo Land - sigh. I thought I'd come back and update anyway, and see if any of you experienced Limbo Land inhabitants had any advice for me!
About me: I'm a 30 year old woman, normal weight, decent diet, moderately active, no smoking or drugs, social drinker. I have a history of PCOS (polycystic ovary syndrome) and had half my thyroid removed at age 17 though its function has remained normal. I had a large lipoma removed from the left side of my pelvic area at age 22.
Symptom onset: during pregnancy 2 years ago. My first symptoms were tingling on my back (left side), heart palpitations, episodic diarrhea with tingling in my legs and usually dizziness as well, one-sided headaches with blurriness in that eye (almost always the left). At 7 months pregnant I had a major episode of confusion, trouble understand and producing speech, followed by tingling in one arm, one side of face, both legs, and weakness which resolved completely within 4 hours. After testing (MRI, echo, ekg) it was called a silent migraine (no headache). Symptoms improved greatly after my baby was born and I felt well for 3-4 months, then it all returned and got much worse.
Current symptoms: tingling/burning/numbness that comes and goes (various locations), terrible heartburn controlled with Nexium, episodes of chills and shivering without a fever (lasting several hours), episodic diarrhea/chills/tingling in legs often accompanied by dizziness and sometimes blurry vision/left-sided headache and weakness. Muscle pain and aching joints similar to the flu (but it doesn't turn into a real flu). Flushing (sensation of being very hot all of a sudden without turning red). Low blood pressure (90/50 normally and can go lower on occasion). Very cold feet and to a lesser degree hands - the feet especially turn grey/purple with white blotchy discolouration. This happens seemingly randomly and is often not triggered by cold - it can occur in a warm house while I'm wearing wool socks! In the heat I get flushed very easily, hands and feet swell and burn and turn red.
Abnormal tests: positive ANA (1:640 speckled), a positive Rheumatoid Factor once (but not on subsequent testing), low ferritin (20), mildly high blood sugar (A1c of 6.1%)
Vascular testing showed no vascular disease but did show severe vasomotor dysfunction (little to no blood flow to limbs on exposure to cold).
No evidence of inflammation in lab work, normal thyroid tests, negative for antibodies related to lupus, Sjogren's, scleroderma, etc. Normal brain/spine MRI. Normal EEG. Normal NCV/EMG. No autoimmune hepatitis. Normal kidney function. No vitamin deficiencies other than the low ferritin and mildly low vitamin D.
I've seen a rheumatologist who said my ANA does suggest a connective tissue disease (like lupus or scleroderma) but the antibodies were negative and my symptoms don't fit a typical pattern for these diseases. She will follow me though. She's not sure if my cold feet/discolouration is Raynaud's or something else. We tried a medication (Amlodipine) for 6 months to see if it improved but it didn't and my low BP made it impossible to increase the dose.
I've seen a neurologist. My neuro exam was normal (I've had many) except for asymmetrical reflexes in my knees (left more brisk, right barely there) and reduced sensation in my feet and lower legs. After a normal MRI and NCV/EMG the neurologist wasn't sure how to proceed. He prescribed Lyrica which I've begun to take. It's been 1.5 weeks and I haven't noticed any difference, but we are increasing the dose next week so I'll wait and see. He is also organizing some more testing - a new brain/spine MRI to see if there have been changes since last year, a Holter monitor (re. palpitations), and a sleep study (I wake up many times a night).
I've seen an endocrinologist. He is running some bloodwork right now (no results yet) for more thyroid stuff as well as more rare diseases like carcinoid syndrome and pheochromacytoma (sp.?)
My doctor just referred me to a gastroenterologist for the chronic diarrhea and GERD. I haven't seen him yet.
Prescription drugs: Nexium and Lyrica. I also take a multivitamin, B6 & B12 + Folate, Omega 3 supp., and iron.
Sorry this is so long! I'm wondering where to go from here. I'm miserable and it's been 2 years since this all started. My symptoms are not constant, which is nice, but they are getting more and more frequent and debilitating. I rarely feel normal, though I do sometimes feel pretty good with just a little tingling or some heartburn or something. Other times I get these "episodes" lasting about 4 hours at a time where I'm absolutely miserable with flushing/chills, weakness, diarrhea, troubling thinking clearly, blurry vision, etc.
I would love any ideas about what this could be and where to go from here. Many, many thanks!
I posted here a while ago and I'm still in Limbo Land - sigh. I thought I'd come back and update anyway, and see if any of you experienced Limbo Land inhabitants had any advice for me!
About me: I'm a 30 year old woman, normal weight, decent diet, moderately active, no smoking or drugs, social drinker. I have a history of PCOS (polycystic ovary syndrome) and had half my thyroid removed at age 17 though its function has remained normal. I had a large lipoma removed from the left side of my pelvic area at age 22.
Symptom onset: during pregnancy 2 years ago. My first symptoms were tingling on my back (left side), heart palpitations, episodic diarrhea with tingling in my legs and usually dizziness as well, one-sided headaches with blurriness in that eye (almost always the left). At 7 months pregnant I had a major episode of confusion, trouble understand and producing speech, followed by tingling in one arm, one side of face, both legs, and weakness which resolved completely within 4 hours. After testing (MRI, echo, ekg) it was called a silent migraine (no headache). Symptoms improved greatly after my baby was born and I felt well for 3-4 months, then it all returned and got much worse.
Current symptoms: tingling/burning/numbness that comes and goes (various locations), terrible heartburn controlled with Nexium, episodes of chills and shivering without a fever (lasting several hours), episodic diarrhea/chills/tingling in legs often accompanied by dizziness and sometimes blurry vision/left-sided headache and weakness. Muscle pain and aching joints similar to the flu (but it doesn't turn into a real flu). Flushing (sensation of being very hot all of a sudden without turning red). Low blood pressure (90/50 normally and can go lower on occasion). Very cold feet and to a lesser degree hands - the feet especially turn grey/purple with white blotchy discolouration. This happens seemingly randomly and is often not triggered by cold - it can occur in a warm house while I'm wearing wool socks! In the heat I get flushed very easily, hands and feet swell and burn and turn red.
Abnormal tests: positive ANA (1:640 speckled), a positive Rheumatoid Factor once (but not on subsequent testing), low ferritin (20), mildly high blood sugar (A1c of 6.1%)
Vascular testing showed no vascular disease but did show severe vasomotor dysfunction (little to no blood flow to limbs on exposure to cold).
No evidence of inflammation in lab work, normal thyroid tests, negative for antibodies related to lupus, Sjogren's, scleroderma, etc. Normal brain/spine MRI. Normal EEG. Normal NCV/EMG. No autoimmune hepatitis. Normal kidney function. No vitamin deficiencies other than the low ferritin and mildly low vitamin D.
I've seen a rheumatologist who said my ANA does suggest a connective tissue disease (like lupus or scleroderma) but the antibodies were negative and my symptoms don't fit a typical pattern for these diseases. She will follow me though. She's not sure if my cold feet/discolouration is Raynaud's or something else. We tried a medication (Amlodipine) for 6 months to see if it improved but it didn't and my low BP made it impossible to increase the dose.
I've seen a neurologist. My neuro exam was normal (I've had many) except for asymmetrical reflexes in my knees (left more brisk, right barely there) and reduced sensation in my feet and lower legs. After a normal MRI and NCV/EMG the neurologist wasn't sure how to proceed. He prescribed Lyrica which I've begun to take. It's been 1.5 weeks and I haven't noticed any difference, but we are increasing the dose next week so I'll wait and see. He is also organizing some more testing - a new brain/spine MRI to see if there have been changes since last year, a Holter monitor (re. palpitations), and a sleep study (I wake up many times a night).
I've seen an endocrinologist. He is running some bloodwork right now (no results yet) for more thyroid stuff as well as more rare diseases like carcinoid syndrome and pheochromacytoma (sp.?)
My doctor just referred me to a gastroenterologist for the chronic diarrhea and GERD. I haven't seen him yet.
Prescription drugs: Nexium and Lyrica. I also take a multivitamin, B6 & B12 + Folate, Omega 3 supp., and iron.
Sorry this is so long! I'm wondering where to go from here. I'm miserable and it's been 2 years since this all started. My symptoms are not constant, which is nice, but they are getting more and more frequent and debilitating. I rarely feel normal, though I do sometimes feel pretty good with just a little tingling or some heartburn or something. Other times I get these "episodes" lasting about 4 hours at a time where I'm absolutely miserable with flushing/chills, weakness, diarrhea, troubling thinking clearly, blurry vision, etc.
I would love any ideas about what this could be and where to go from here. Many, many thanks!
Hi, I know what you mean about not starting treatment and stuff but sometimes you just have to try it and see what happens.
This alternative guy is probably quite right when he says that because something is negative doesnt make it so. Look at Lymes disease for example. They are finding out now that lots of people who were told they didnt have it have it....because some of the testing was not good enough etc.
The same with lupus. YOu can have negative bloods for lupus but can still have lupus.
What did this guy want to treat you with?
Like i said sometimes you just have to try....you never know it could work lol....
xx maria
This alternative guy is probably quite right when he says that because something is negative doesnt make it so. Look at Lymes disease for example. They are finding out now that lots of people who were told they didnt have it have it....because some of the testing was not good enough etc.
The same with lupus. YOu can have negative bloods for lupus but can still have lupus.
What did this guy want to treat you with?
Like i said sometimes you just have to try....you never know it could work lol....
xx maria
Thank you for your ideas. No, I don't think a blood volume test was done though I'm not certain if it's something that is bundled together with other vascular testing.
I'm definitely aware of the pathogen hypothesis, particularly as a cause of rheumatic diseases (like scleroderma, lupus, RA, and so on). I have also seen an alternative MD (who integrates eastern medicine into his practice) who tested me for mycoplasma, but all results were negative. He said this didn't mean that I didn't have a chronic occult infection and wanted to treat me as if I did. I wasn't really sure about the approach and have put it off. There are no LLMD's in Canada so if I wanted to pursue the sort of therapy they advocate I would have to travel to the US. Even the doctor I just mentioned (who is Canadian) does not like to test for and treat Lyme Disease. He doesn't like the multiple antibiotic approach of treatment and was offering hydrogen peroxide therapy and chelation.
Sometimes it feels very hard to research enough to be able to assess various drugs and therapies in order to make good decisions about treatment. I am open to both conventional and alternative medicine, but try to make decisions about treatment on a case by case basis. If I found a great doctor who I could trust to assess these things for me, then that would be fabulous! I don't have one at the moment though I have seen a variety of specialists, a naturopath, my family doctor, and this alternative MD. Sigh.
I'm definitely aware of the pathogen hypothesis, particularly as a cause of rheumatic diseases (like scleroderma, lupus, RA, and so on). I have also seen an alternative MD (who integrates eastern medicine into his practice) who tested me for mycoplasma, but all results were negative. He said this didn't mean that I didn't have a chronic occult infection and wanted to treat me as if I did. I wasn't really sure about the approach and have put it off. There are no LLMD's in Canada so if I wanted to pursue the sort of therapy they advocate I would have to travel to the US. Even the doctor I just mentioned (who is Canadian) does not like to test for and treat Lyme Disease. He doesn't like the multiple antibiotic approach of treatment and was offering hydrogen peroxide therapy and chelation.
Sometimes it feels very hard to research enough to be able to assess various drugs and therapies in order to make good decisions about treatment. I am open to both conventional and alternative medicine, but try to make decisions about treatment on a case by case basis. If I found a great doctor who I could trust to assess these things for me, then that would be fabulous! I don't have one at the moment though I have seen a variety of specialists, a naturopath, my family doctor, and this alternative MD. Sigh.
Hey Zoe.
Sorry to hear about all your troubles!
Would you know if a Blood Volume Test was done
at the time you were being checked for vascular disease?
The Test is relatively simple, it measures the red cells in ml
against your body weight in Kg. The normal range is 25-30ml/1Kg
A deficiency of over 15% should be a cause for further investigation.
It's like a person involved in a serious injury losing let's say a pint of blood!
That constitutes an emergency situation, right?
This would be indicative of an underlying problem, possibly an undetected
pathogenic infectious condition. Your symptomology points to a multi-systemic condition. Fibro -even with it's various types- is not consistent with this symptomology unless there's an undelying condition.
For more details on this, please go to immed.org and do a medhelp search using the forum's search engine on the top of this page,
for Dr. Garth Nicolson.
He has been a contributor in the forum with his expertise in this field both in research and treatment. The majority of cases of suspected fibro, like this one, are linked to underlying "undetectable pathogenic infections and co-infections".
Unfortunately, Rheumies and Neuros are not familiar with this area of medicine, for various reasons that I won't get into now, unless they are
LLMDs.
It is great that you posted here again. You are getting tons of ideas, links and support. I do hope that you find some answers and eventually get back to a "normal" and healthy life and enjoy your family and your friends to the fullest!
If you have any questions please post again.
God Bless!
Niko
Sorry to hear about all your troubles!
Would you know if a Blood Volume Test was done
at the time you were being checked for vascular disease?
The Test is relatively simple, it measures the red cells in ml
against your body weight in Kg. The normal range is 25-30ml/1Kg
A deficiency of over 15% should be a cause for further investigation.
It's like a person involved in a serious injury losing let's say a pint of blood!
That constitutes an emergency situation, right?
This would be indicative of an underlying problem, possibly an undetected
pathogenic infectious condition. Your symptomology points to a multi-systemic condition. Fibro -even with it's various types- is not consistent with this symptomology unless there's an undelying condition.
For more details on this, please go to immed.org and do a medhelp search using the forum's search engine on the top of this page,
for Dr. Garth Nicolson.
He has been a contributor in the forum with his expertise in this field both in research and treatment. The majority of cases of suspected fibro, like this one, are linked to underlying "undetectable pathogenic infections and co-infections".
Unfortunately, Rheumies and Neuros are not familiar with this area of medicine, for various reasons that I won't get into now, unless they are
LLMDs.
It is great that you posted here again. You are getting tons of ideas, links and support. I do hope that you find some answers and eventually get back to a "normal" and healthy life and enjoy your family and your friends to the fullest!
If you have any questions please post again.
God Bless!
Niko
Thanks!
Yes, you are definitely right that these diseases often take a long time to really show themselves. I know I may need to wait a long time to get positive antibody tests, or it may never even happen. I guess people can be diagnosed with seronegative lupus or RA, etc. though that must make the diagnosis a bit more complicated. The antibodies really point you towards the right disease often, I think.
My rheumatologist was thinking I was developing scleroderma at first rather than lupus. That rheumatologist retired and I got another one and she disagreed. She isn't even totally sure it's a connective tissue disease. However she knows a lot about these diseases and I think she's a good doctor... it's just frustrating to watch and wait when you're feeling so crummy.
Thanks for your ideas!
Yes, you are definitely right that these diseases often take a long time to really show themselves. I know I may need to wait a long time to get positive antibody tests, or it may never even happen. I guess people can be diagnosed with seronegative lupus or RA, etc. though that must make the diagnosis a bit more complicated. The antibodies really point you towards the right disease often, I think.
My rheumatologist was thinking I was developing scleroderma at first rather than lupus. That rheumatologist retired and I got another one and she disagreed. She isn't even totally sure it's a connective tissue disease. However she knows a lot about these diseases and I think she's a good doctor... it's just frustrating to watch and wait when you're feeling so crummy.
Thanks for your ideas!
Well, it's an interesting question. I was bitten by a tick about 10 years ago in Europe. I made a mess of removing it (on my own) and never got antibiotics because I didn't have a doctor there and when I got back here my own doctor said it had been too long to bother with treating it. I didn't get sick immediately, but have had some mild issues (flu-like symptoms and joint pain in my hands that comes and goes) over the years. It was 2 years ago that everything really flared up during my pregnancy though.
I asked my neurologist at the beginning if he would test for Lyme. His answer was that it was highly controversial but he would do the Western Blot/ELISA and if it was positive then we'd have to think about what that meant and how to move forward. I guess he doesn't really believe in chronic forms of Lyme. The test was negative anyway. BUT I know there's a high false negative rate AND I then found out that those tests are for local types of tick-borne pathogens only. The ones common in Denmark are NOT the ones tested for on the Western Blot/ELISA here anyway.
For a while I wondered about it and thought I should order a test from Igenex, but I contacted them to ask if they tested for the European pathogens and didn't get a good response. I don't want to waste the money on the test as it's very expensive. Also I worry that their tests seem to be positive so often. AND I live in Canada where we don't have any LLMD's so trying to get treatment would be almost impossible.
So yes, I wonder about it. I think there's a possibility I was infected though I don't know if that's what's causing these current problems and symptoms...
What about you? Have you done the testing?
Zoe
I asked my neurologist at the beginning if he would test for Lyme. His answer was that it was highly controversial but he would do the Western Blot/ELISA and if it was positive then we'd have to think about what that meant and how to move forward. I guess he doesn't really believe in chronic forms of Lyme. The test was negative anyway. BUT I know there's a high false negative rate AND I then found out that those tests are for local types of tick-borne pathogens only. The ones common in Denmark are NOT the ones tested for on the Western Blot/ELISA here anyway.
For a while I wondered about it and thought I should order a test from Igenex, but I contacted them to ask if they tested for the European pathogens and didn't get a good response. I don't want to waste the money on the test as it's very expensive. Also I worry that their tests seem to be positive so often. AND I live in Canada where we don't have any LLMD's so trying to get treatment would be almost impossible.
So yes, I wonder about it. I think there's a possibility I was infected though I don't know if that's what's causing these current problems and symptoms...
What about you? Have you done the testing?
Zoe
Zoe,
My mom is the same as you - and we shared many of the same symptoms but I am not ANA positive nor do I have any RA factor's. My labs are totally normal. I am a MS candidate.
She was tested for FM. It was negative. She has many of the lupus markers but they can't diagnose her with lupus because it's not all of them.
The Rheumy told her the same thing he told you - that it appears it's a connective tissue disease but they couldn't tell which one and they'd probably have to send her to a specialist on the East Coast to figure it out.
I know this doesn't help you but maybe there is a clinic that specializes in connective tissue disease. I have been told sometimes lupus mimics many different diseases and with your markers you are a "red flag" --- my mom was told that sometimes lupus antibodies take time to build up or have to be caught at the right time. Maybe that's the case with you?
Hang in there, it sounds like you are in good hands with your PCP and others. Hugs
My mom is the same as you - and we shared many of the same symptoms but I am not ANA positive nor do I have any RA factor's. My labs are totally normal. I am a MS candidate.
She was tested for FM. It was negative. She has many of the lupus markers but they can't diagnose her with lupus because it's not all of them.
The Rheumy told her the same thing he told you - that it appears it's a connective tissue disease but they couldn't tell which one and they'd probably have to send her to a specialist on the East Coast to figure it out.
I know this doesn't help you but maybe there is a clinic that specializes in connective tissue disease. I have been told sometimes lupus mimics many different diseases and with your markers you are a "red flag" --- my mom was told that sometimes lupus antibodies take time to build up or have to be caught at the right time. Maybe that's the case with you?
Hang in there, it sounds like you are in good hands with your PCP and others. Hugs
hello there,
a lot of what you have experienced sounds familiar to my own situation--onset during & after pregnancy, symptom constellation, etc. i am not currently diagnosed.
have you been worked up for lyme disease?
just curious.
blessings,
IWC
a lot of what you have experienced sounds familiar to my own situation--onset during & after pregnancy, symptom constellation, etc. i am not currently diagnosed.
have you been worked up for lyme disease?
just curious.
blessings,
IWC
Yes, one-sided pain in the chest... for me it's on the lower right edge of the sternum. It aches and is tender if I press on it. I don't have it right now fortunately. I've mentioned it to my doctor a couple times and never gotten an answer on what is causing it (probably because I had a whole bunch of questions and problems to address at each appointment!) I did search online a long time ago and thought costochondritis fit well. I think it's also common in lupus?
If my current tests come back normal (it's an MRI, sleep study, and Holter Monitor) then I am definitely discussing FM with my neurologist. I don't have an appointment with my rheumatologist any time soon or I'd talk with her about it first...
One question: any idea what causes asymmetrical reflexes in the knees? My neurologist was not sure what to make of the fact that my right knee barely moves at all whereas the left is normal. I figured it was all tied in to my neuropathy somehow, but I've since looked it up online and found out that a lot of the neuromuscular diseases cause overly brisk reflexes, not an asymmetry...
If my current tests come back normal (it's an MRI, sleep study, and Holter Monitor) then I am definitely discussing FM with my neurologist. I don't have an appointment with my rheumatologist any time soon or I'd talk with her about it first...
One question: any idea what causes asymmetrical reflexes in the knees? My neurologist was not sure what to make of the fact that my right knee barely moves at all whereas the left is normal. I figured it was all tied in to my neuropathy somehow, but I've since looked it up online and found out that a lot of the neuromuscular diseases cause overly brisk reflexes, not an asymmetry...
Oh yeah, I forgot to respond about the chest pain...I get that too. One sided, hurts like all h***? I didn't know what it was, but I ended up going to Urgent care one day cuz I couldn't take the pain anymore. It ended up being costochondritis. Costo is huge in FM. I remember when I last had it, I couldn't even lean forward. HURTS with a capital HURTS!!!!
Good luck with it and let us know if/when you bring it up to your doc.
Hugs,
Sarah
Good luck with it and let us know if/when you bring it up to your doc.
Hugs,
Sarah
Hi
NO fibromyalgia would not give you high ANA levels, there is nothing in fibromyalgia that would show in blood tests. However, you can have a connective soft tissue disease that would show high ANA levels and people with this and Lupus do and can go on to develop FIBROMYALGIA for some bizarre reason.
Lots of people with MS are also diagnosed with FMS.
Fibromyalgia and chest pain.
http://www.fibromyalgia-symptoms.org/fibromyalgia_chest_symptoms.html
Patient information on how to diagnose fibromyalgia because even doctors havent got a clue. My daughter was told she had FMS without even an EXAM LOL...seriously I am not making it up.
http://www.fmnetnews.com/fibro-basics/diagnosis
As to exercising. Well you dont have to go running about lol or gym you can exercise gently at home. DO YOU HAVE STAIRs. If so just using the last few steps to step up and down is exercise. Stretching...is good. Walking the kids outside is exercise. Swimming is great for fibro especially in a warm pool.
The difference between fibro and M.E. is that with M.E. with exercise you dont recover well and the fatigue will worsen, with Fibro exercise makes you feel better...with MS walking is good for you but might make you feel tired and your legs achey and shakey but does not present with bad fatigue and once you cool down you feel better.
I think you are like me. I have two things going on. Even my GP agrees with that and said one is connective tissue disorder but we are not sure which one. Which helps because I too had high ANA. The fact my dad had lupus is a good indicator that i do have something CTD going on.
Try the pressure test yourself. IF YOU GO OUCH OMG THAT HURTS then you know you might be on the right track. IF it has no pain then it isnt fibro.
hugs. mariax
NO fibromyalgia would not give you high ANA levels, there is nothing in fibromyalgia that would show in blood tests. However, you can have a connective soft tissue disease that would show high ANA levels and people with this and Lupus do and can go on to develop FIBROMYALGIA for some bizarre reason.
Lots of people with MS are also diagnosed with FMS.
Fibromyalgia and chest pain.
http://www.fibromyalgia-symptoms.org/fibromyalgia_chest_symptoms.html
Patient information on how to diagnose fibromyalgia because even doctors havent got a clue. My daughter was told she had FMS without even an EXAM LOL...seriously I am not making it up.
http://www.fmnetnews.com/fibro-basics/diagnosis
As to exercising. Well you dont have to go running about lol or gym you can exercise gently at home. DO YOU HAVE STAIRs. If so just using the last few steps to step up and down is exercise. Stretching...is good. Walking the kids outside is exercise. Swimming is great for fibro especially in a warm pool.
The difference between fibro and M.E. is that with M.E. with exercise you dont recover well and the fatigue will worsen, with Fibro exercise makes you feel better...with MS walking is good for you but might make you feel tired and your legs achey and shakey but does not present with bad fatigue and once you cool down you feel better.
I think you are like me. I have two things going on. Even my GP agrees with that and said one is connective tissue disorder but we are not sure which one. Which helps because I too had high ANA. The fact my dad had lupus is a good indicator that i do have something CTD going on.
Try the pressure test yourself. IF YOU GO OUCH OMG THAT HURTS then you know you might be on the right track. IF it has no pain then it isnt fibro.
hugs. mariax
I was tested with the pressure point test thingy too. I did not come close to having the required 11 out of 18, but the doc said that you don't have to have those tender points to get a dx. This guy I found is awesome! He is really a forefather on FM. He has wrote many medical articles on it, teaches at a medical college, and also travels the country to teach other docs about it and whats new with it.
As far as the positive ANA, I don't know. It could make sense...
I TRY to exercise, but not near as much as I used to/should. It is very important to exercise with Fibro. The most important aspect of the exercise is the cardio stuff. I am told repeatedly by the doc and PT/OT to get an exercise bike or join a swimming class. I have yet to do this, but I do pilates when I feel good enough, which is also really good for FM. You are supposed to really do some good stretching too, for like 20+mins a day.
Lastly, diet is very important. Lots of protein! Supposedly even more than
the average person. For some reason, if I can remember correctly what I was told, either the body breaks down the protein too fast or converts it into lactic acid too quickly or something. I just remember being told to eat lots of protein.
I heard somewhere or read somewhere that FM is another form of MS too. But we shall see what becomes of that research.
Sarah
As far as the positive ANA, I don't know. It could make sense...
I TRY to exercise, but not near as much as I used to/should. It is very important to exercise with Fibro. The most important aspect of the exercise is the cardio stuff. I am told repeatedly by the doc and PT/OT to get an exercise bike or join a swimming class. I have yet to do this, but I do pilates when I feel good enough, which is also really good for FM. You are supposed to really do some good stretching too, for like 20+mins a day.
Lastly, diet is very important. Lots of protein! Supposedly even more than
the average person. For some reason, if I can remember correctly what I was told, either the body breaks down the protein too fast or converts it into lactic acid too quickly or something. I just remember being told to eat lots of protein.
I heard somewhere or read somewhere that FM is another form of MS too. But we shall see what becomes of that research.
Sarah
Thank you, Sarah!
No one has ever suggested fibromyalgia to me. The second rheumatologist I saw (after the first retired) did poke and prod some areas that I thought might have been the trigger points common to fibromyalgia. This was after I mentioned the intermittent pain in my chest I get (around my breastbone on one side). The points he touched were not tender, but who knows, it wasn't exactly a comprehensive evaluation. That rheumatologist continually tells me to exercise more, which I suppose is good for almost every ailment but especially for fibromyalgia? It's something I certainly want to do, but it's really tough with 3 young children and no one around in the daytime to babysit, the snowy winter, my low blood pressure causing me to feel dizzy a lot, the cost of gym memberships, my aching muscles and joints... the excuses go on and on! But I know it's a good idea and I need to work hard to find solutions to those things that are getting in my way. Do you exercise regularly?
I'm not opposed to getting a fibromyalgia diagnosis if I meet the criteria. Yes, I'm worried that I won't be taken seriously by... well, everybody, but I guess I need to learn more about it.
One question: would it be common for someone with FM to have a high positive ANA? I was told that there are many people who may have a low positive (say 1:80) but that my level was so high that it meant something serious was going on. I'm pretty sure that FM isn't one of the diseases known to cause high positive ANA's - though I suppose I could have FM and another autoimmune disease. Do they often occur together?
I guess I can hope that the Lyrica I'm already taking will be effective in reducing some of my symptoms. I'm only taking 75 mg right now and will increase to 150 mg next week. I see the neurologist again in 3 months to review results of tests and talk about how the Lyrica is helping, or not.
Thanks so much for your ideas. You've given me something to think about. How are you doing in coping with your fibromyalgia?
Zoe
No one has ever suggested fibromyalgia to me. The second rheumatologist I saw (after the first retired) did poke and prod some areas that I thought might have been the trigger points common to fibromyalgia. This was after I mentioned the intermittent pain in my chest I get (around my breastbone on one side). The points he touched were not tender, but who knows, it wasn't exactly a comprehensive evaluation. That rheumatologist continually tells me to exercise more, which I suppose is good for almost every ailment but especially for fibromyalgia? It's something I certainly want to do, but it's really tough with 3 young children and no one around in the daytime to babysit, the snowy winter, my low blood pressure causing me to feel dizzy a lot, the cost of gym memberships, my aching muscles and joints... the excuses go on and on! But I know it's a good idea and I need to work hard to find solutions to those things that are getting in my way. Do you exercise regularly?
I'm not opposed to getting a fibromyalgia diagnosis if I meet the criteria. Yes, I'm worried that I won't be taken seriously by... well, everybody, but I guess I need to learn more about it.
One question: would it be common for someone with FM to have a high positive ANA? I was told that there are many people who may have a low positive (say 1:80) but that my level was so high that it meant something serious was going on. I'm pretty sure that FM isn't one of the diseases known to cause high positive ANA's - though I suppose I could have FM and another autoimmune disease. Do they often occur together?
I guess I can hope that the Lyrica I'm already taking will be effective in reducing some of my symptoms. I'm only taking 75 mg right now and will increase to 150 mg next week. I see the neurologist again in 3 months to review results of tests and talk about how the Lyrica is helping, or not.
Thanks so much for your ideas. You've given me something to think about. How are you doing in coping with your fibromyalgia?
Zoe
There is no problem putting the name of the book on here for me. If you like put it on the sticky post about useful information and links.
I know about the book. I think it is great that finally people like doctors are looking outside the box. Some are linking it with M.E and MS now too so in essence it is all and one disease but in varying degrees.
i.e. with M.E. fibro it isnt auto immune at the time but can change into that and cause demylinating lesions.
My daughter was diagnosed for example with M.E. and she had lesions on her MRI brain scan and at the time they would not dismiss then as demylinating, but her illness did not then progress like classic MS.
I am wondering to be honest just what is classic MS.....and do the neurologists really really understand it.
I also read that it is to do with substance P which makes a lot of sense to me. Because it really feels sometimes that the nervous system is stuck on high lol.
http://fibromyalgia.physiciansforpatients.com/do/discussions/3
I asked if I had fibro i would be happy with that diagnosis but got told no way and also no to M.E. and my neurologist actually told me there was no such thing as M.E. can you believe that i was gobsmacked and reminded him that The World Health Organisation had classed it as neurological disorder he did not even know that.
MY GOODNESS SARAH what chance have we got when the so called professionals are so narrow minded about it all.
Makes me so mad.
Grrrrr and I am in a lot of pain today, with my teeth and my leg boo hoo lol.
I am going to try and eat something and take a diazepam and get some kip.
Big hugs. Mariax
I know about the book. I think it is great that finally people like doctors are looking outside the box. Some are linking it with M.E and MS now too so in essence it is all and one disease but in varying degrees.
i.e. with M.E. fibro it isnt auto immune at the time but can change into that and cause demylinating lesions.
My daughter was diagnosed for example with M.E. and she had lesions on her MRI brain scan and at the time they would not dismiss then as demylinating, but her illness did not then progress like classic MS.
I am wondering to be honest just what is classic MS.....and do the neurologists really really understand it.
I also read that it is to do with substance P which makes a lot of sense to me. Because it really feels sometimes that the nervous system is stuck on high lol.
http://fibromyalgia.physiciansforpatients.com/do/discussions/3
I asked if I had fibro i would be happy with that diagnosis but got told no way and also no to M.E. and my neurologist actually told me there was no such thing as M.E. can you believe that i was gobsmacked and reminded him that The World Health Organisation had classed it as neurological disorder he did not even know that.
MY GOODNESS SARAH what chance have we got when the so called professionals are so narrow minded about it all.
Makes me so mad.
Grrrrr and I am in a lot of pain today, with my teeth and my leg boo hoo lol.
I am going to try and eat something and take a diazepam and get some kip.
Big hugs. Mariax
Yes, Maria! Reading this book that my new doc gave me, it explains how all that stuff is linked. And while many people and docs still believe that fibro is a muscle disorder if they believe in it at all, it is actually a problem with the nervous system.
As I said above, there are 5 different subsets of fibro and one is called Neurally Mediated Hypotension Tendencies. It causes hypotension, palpatations, a fast resting heart rate, etc. There are also Hypoglycemic, Hypothyroid, Immune System Dysfunction, Reproductive Hormone Dysfunction, and General Tendencies.
This is a great book! I wish I could copy it and send it to everyone. Not saying or meaning that everyone has it, but it is really good knowledge to have and it really explains things! Am I allowed to post the title of the book? I guess I'll try....It's called "Fibromyalgia. A Handbook for Self Care and Treatment" by Janet A. Hulme, PT. Also with Peggy Schlesinger, M.D., Rheumatologist.
I wish this is the only thing that was wrong with me, but the doctor said no, I can't put all your problems, symptoms, and clinical findings into just fibromyalgia. Darn! It sounds that with the treatment for Fibro it is very controllable. It is definately a lifestyle change, though. It was explained to me that it is like diabetes in that with some lifestyle changes, it is very controllable.
Sarah
As I said above, there are 5 different subsets of fibro and one is called Neurally Mediated Hypotension Tendencies. It causes hypotension, palpatations, a fast resting heart rate, etc. There are also Hypoglycemic, Hypothyroid, Immune System Dysfunction, Reproductive Hormone Dysfunction, and General Tendencies.
This is a great book! I wish I could copy it and send it to everyone. Not saying or meaning that everyone has it, but it is really good knowledge to have and it really explains things! Am I allowed to post the title of the book? I guess I'll try....It's called "Fibromyalgia. A Handbook for Self Care and Treatment" by Janet A. Hulme, PT. Also with Peggy Schlesinger, M.D., Rheumatologist.
I wish this is the only thing that was wrong with me, but the doctor said no, I can't put all your problems, symptoms, and clinical findings into just fibromyalgia. Darn! It sounds that with the treatment for Fibro it is very controllable. It is definately a lifestyle change, though. It was explained to me that it is like diabetes in that with some lifestyle changes, it is very controllable.
Sarah
Hi and welcome back.
I totally agree with Sarah on this. I have done loads of research now for fibromyalgia and have found that there is a real link with fibromyalgia and the Autonomic nervous system. Please read this link. It is very informative.
http://www.fmpartnership.org/Lavin%20article.htm
IF you note everything you mention is covered by the role of autonomic nervous system, even down to palpitations and low blood pressure.
There is now lots more research going on thankfully for Fibromyalgia which is totally dismissed as a simple muscle disorder. IT IS NOT.
I would certainly do some research, also print of the article and when you see your rheumy show him/her lol.
LYRICA by the way is now used for FIBROMYALGIA patients.
Flushing chills are classic autonomic symptom, low blood pressure, gastro problems, palpitations, and poor sleeping.
Yes i would certainly at least look at this as a possibility. xxx Hugs. Maria
I totally agree with Sarah on this. I have done loads of research now for fibromyalgia and have found that there is a real link with fibromyalgia and the Autonomic nervous system. Please read this link. It is very informative.
http://www.fmpartnership.org/Lavin%20article.htm
IF you note everything you mention is covered by the role of autonomic nervous system, even down to palpitations and low blood pressure.
There is now lots more research going on thankfully for Fibromyalgia which is totally dismissed as a simple muscle disorder. IT IS NOT.
I would certainly do some research, also print of the article and when you see your rheumy show him/her lol.
LYRICA by the way is now used for FIBROMYALGIA patients.
Flushing chills are classic autonomic symptom, low blood pressure, gastro problems, palpitations, and poor sleeping.
Yes i would certainly at least look at this as a possibility. xxx Hugs. Maria
Hello and welcome back. I'm going to throw something out there and it may sound funny. Has it ever been suggested to you that you have fibro? I ask because I was recently diagnosed with fibro and have since learned a lot about it.
Many of your symptoms fit with fibromyalgia. There is soooo much that most people don't know about it. There are 5 different types, and from what you describe, you could fit into at least 3 of them.
Many people also don't believe in fibro. Many doctors don't either. I didn't myself. Many doctors say fibro even when they don't believe in it because they feel it will get the patient off their backs, so to speak.
I have been seeing a pain specialist who also specializes in fibro and have learned a lot from him. Fibro can cause obviously widespread pain, but also many, many GI problems, some neurological problems like tingling, numbness, dizziness; muscle spasms, cognitive issues like short term memory problems, etc. The list goes on and on.
My suggestion would be to ask the Rheummy about it. I am not by any means saying that you do have it, but a lot of your symptoms fit. I am not saying even if you do have it that is all you have. But it's may be worth a mention? It is a real condition with real treatment, although no cure. It also waxes and wanes, much like MS.
Anyhoo, good luck and let me know what you think.
Sarah
Many of your symptoms fit with fibromyalgia. There is soooo much that most people don't know about it. There are 5 different types, and from what you describe, you could fit into at least 3 of them.
Many people also don't believe in fibro. Many doctors don't either. I didn't myself. Many doctors say fibro even when they don't believe in it because they feel it will get the patient off their backs, so to speak.
I have been seeing a pain specialist who also specializes in fibro and have learned a lot from him. Fibro can cause obviously widespread pain, but also many, many GI problems, some neurological problems like tingling, numbness, dizziness; muscle spasms, cognitive issues like short term memory problems, etc. The list goes on and on.
My suggestion would be to ask the Rheummy about it. I am not by any means saying that you do have it, but a lot of your symptoms fit. I am not saying even if you do have it that is all you have. But it's may be worth a mention? It is a real condition with real treatment, although no cure. It also waxes and wanes, much like MS.
Anyhoo, good luck and let me know what you think.
Sarah
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