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skin burning,pain,tender/painful points.dizzyness,dry eyes etc
discomfort/pain experienced over many years Last 5yrs,symtoms of dizzyness,loclized and widespread pain,tender/extremely painful areas, localised.speech and memory probs.dry sore eyes,continuose bladder,throat,chest infections.numbness in limbs,muscle weakness.sensitive to light,noise,tastes.
All dismissed by various doctors and consultantants,as psychosamatic.ONE G.P tried his best,but was told not to refer me.I have since moved and my G.P now,said its my age/bones.gat on with it.Im not looking for a miracle,just some form of answer,it gets me down to be thought of as a fraud.Bellieve me,if i could get rid of this today and never see another doctor to be told im a drain on the health system,....i would.Any addvisse would be gratefully recieved.thank you.
All dismissed by various doctors and consultantants,as psychosamatic.ONE G.P tried his best,but was told not to refer me.I have since moved and my G.P now,said its my age/bones.gat on with it.Im not looking for a miracle,just some form of answer,it gets me down to be thought of as a fraud.Bellieve me,if i could get rid of this today and never see another doctor to be told im a drain on the health system,....i would.Any addvisse would be gratefully recieved.thank you.
Many people with fibro and CFS have some symptoms of Sjogren's Syndrome. We also have an intolerance to gluten and tend to do better on a gluten free diet. Two other things that we don't seem to tolerate very well is alcohol and surgery.
Thank you. I'll look into this. Since I seem to have been having some kind of stomach/bowel virus that is going around, I'm probably heading for the doctor today anyway. So, I can certainly ask my doctor about checking into this. I do have several of the symptoms on that list, and I have had recent issues with my kidneys and have developed neuropathy that doesn't seem to stay in any one place for very long. But, the last time I was tested for rheumatoid factors, I was told that the tests were negative. I am puzzled why I have all the other symptoms for CFS/FMS, including many of the trigger points, if the rheumatoid factors were negative the last time they were checked, which was quite recently. Still, it's worth checking into, since I'll be seeing my doctor anyway and I've had chronic dry eye for such a long time. I definitely have the vaginal dryness, too, which is quite uncomfortable to say the very least.
I remember that you mentioned that not everyone with gluten and dairy intolerance has Celiac, which is also an autoimmune disease, but not everyone who tests negative can be said to not have it either. I'm not going to test positive for Sprue, but I haven't been eating gluten for a very long time. There is no doubt that I'm gluten intolerant, in any case, and my doctor did say that the only real way to treat Celiac is to keep on doing what I've been doing. But, since I've had nutritional deficiencies, and my nephew was told this past year that he has Celiac, then there are two things that point to Celiac in my case, since it is usually genetic. His mother's side of the family doesn't have any Celiac issues, but when I told my brother that I was sure I had Celiac and it is a genetic disorder, he wisely had his kids tested. My nephew tested positive for Celiac, so we know which side of the family he got it from. Yep, I'm the culprit in his case.
Then, too, I didn't know it until my doctor told me while we were reviewing the medications in my list on the computer in her office, that Eczema is also another symptom of Celiac. I mentioned to her that when I stopped eating gluten, I discovered that from about that point on that I haven't had any more SEVERE outbreaks of Eczema on the heels of my hands. I used to get some really atrocious outbreaks that could take up to a year to heal. That is yet another big symptom of the Celiac. In any case, like my doctor already told me, one way or the other, there is no doubt that I'm gluten intolerant.
I remember that you mentioned that not everyone with gluten and dairy intolerance has Celiac, which is also an autoimmune disease, but not everyone who tests negative can be said to not have it either. I'm not going to test positive for Sprue, but I haven't been eating gluten for a very long time. There is no doubt that I'm gluten intolerant, in any case, and my doctor did say that the only real way to treat Celiac is to keep on doing what I've been doing. But, since I've had nutritional deficiencies, and my nephew was told this past year that he has Celiac, then there are two things that point to Celiac in my case, since it is usually genetic. His mother's side of the family doesn't have any Celiac issues, but when I told my brother that I was sure I had Celiac and it is a genetic disorder, he wisely had his kids tested. My nephew tested positive for Celiac, so we know which side of the family he got it from. Yep, I'm the culprit in his case.
Then, too, I didn't know it until my doctor told me while we were reviewing the medications in my list on the computer in her office, that Eczema is also another symptom of Celiac. I mentioned to her that when I stopped eating gluten, I discovered that from about that point on that I haven't had any more SEVERE outbreaks of Eczema on the heels of my hands. I used to get some really atrocious outbreaks that could take up to a year to heal. That is yet another big symptom of the Celiac. In any case, like my doctor already told me, one way or the other, there is no doubt that I'm gluten intolerant.
Sjogren's Syndrome is an autoimmune disease. The disease attacks the patient's mucous membranes and moisture-secreting glands in their eyes and mouth....resulting in decreased production of tears and saliva. The disease can damage other tissues as well.
The cause of Sjogren's could be a bacterial or viral infection (according to the Mayo Clinic). Fortunately there are tests that can help diagnose the condition.
My mother has Sjogren's and is doing Dr. Jernigan's treatment... the same treatment that I'm on ! Like me, she's also having some herxing symptoms and slowly making progress.
http://www.mayoclinic.com/health/sjogrens-syndrome/DS00147 ---- about Sjogren's
I'm in the same boat as you Medium. I've had Fibromyalgia the better part of my life, and it's grown worse with age. However, 2 years ago, I began having classic MS symptoms. I was overwhelmed with so many symptoms at once. Parts of me kept going numb, tingling everywhere, pins-&-needles, horrible balance, nausea, buzzing/vibrating & burning sensations, severe spasticity, muscle spasms, severe cognitive/memory & speech/language problems, etc...
I can name 3 previous 'severe' flare-ups since that date (including that one) and have been in my 4th, since my latest move to Montana...about 6 months ago. Started out with severe anxiety attacks 24/7, then after they finally subsided (think my new Rx of Cymbalta has helped), I began having numbness in my legs, arms, hands, feet, & chin, buzzing/vibrating sensations, burning sensations, severe muscle spasms, spasticity is worse, and eye problems (vision going blurry off-&-on).
New optometrist last week, said he thought I was getting glaucoma...as my tests revealed high intra-occular pressure, moderate tissue build-up on the back of the eye, & "notching" on the head rim of my right-eye optic nerve. So, I know that this is all beyond Fibro. I'm still susupecting either CNS Lupus or MS. Although my first set of MRI's were clear, they were also done on an "open unit"...machine with just a big magnetic ring you pass through. These aren't nearly as powerful or accurate as the "closed units" (tube-like enclosure), and aren't recommended for picking up brain lesions. I have no idea why my 1st Neuro used this kind. So, I would like to have them repeated, but will wait and see what my new Rheumatologist says....as my last round of doctors back in Oklahoma thought it was Lupus (ENT, Neuro, & Pain Specialist). ~tj
I can name 3 previous 'severe' flare-ups since that date (including that one) and have been in my 4th, since my latest move to Montana...about 6 months ago. Started out with severe anxiety attacks 24/7, then after they finally subsided (think my new Rx of Cymbalta has helped), I began having numbness in my legs, arms, hands, feet, & chin, buzzing/vibrating sensations, burning sensations, severe muscle spasms, spasticity is worse, and eye problems (vision going blurry off-&-on).
New optometrist last week, said he thought I was getting glaucoma...as my tests revealed high intra-occular pressure, moderate tissue build-up on the back of the eye, & "notching" on the head rim of my right-eye optic nerve. So, I know that this is all beyond Fibro. I'm still susupecting either CNS Lupus or MS. Although my first set of MRI's were clear, they were also done on an "open unit"...machine with just a big magnetic ring you pass through. These aren't nearly as powerful or accurate as the "closed units" (tube-like enclosure), and aren't recommended for picking up brain lesions. I have no idea why my 1st Neuro used this kind. So, I would like to have them repeated, but will wait and see what my new Rheumatologist says....as my last round of doctors back in Oklahoma thought it was Lupus (ENT, Neuro, & Pain Specialist). ~tj
What's the difference between the dry eyes that I thought was a common symptom of CFS/FMS and the dry eyes in Sjogren's syndrome, which I have never even heard of and don't know what the symptoms are?
i think you probably have Sjogren's syndrome, mainly because of the dry eyes. I have Sjogren's syndrome and I have many of the symptoms you have. Do not take a doctor's diagnosis as gospel. Half of the doctors out there graduated in the bottom of their class and are not top notch. Sometimes blood markers for this disease are not positive and only show up later in life. So believe in what you feel and do not let doctors tell you that you are nuts or its all in your head. Half the time the doctors are just too lazy to do the digging required to solve complex cases.
hey I too am having problems suffering from eye pain/dryness. One of my eyes are lazy and the muscles seem to be getting progressivly worse I see floaters and light/bright colors hurt me. my skin burns(arms) my joints pop.. I cant even think of a muscle that doesnt twitch.. It feels like creapy things crawl in my head.. and tingles in my limbs...Ive been tested for all the autoimmune dis.. and also my thyroid has been checked... Is there anyone out there who is dealing with this? Im only 23 with a 4 yr old full time student trying to go to med school. I can hardly read my txt books anymore..Any suggestions?
Has anybody notice that certain foods can elevate your pain? Took me years to figure out all of this, because doctors just don't know. Acidic foods, yeast, vinegar, spices, some soy products, whey, read labels, and see for yourself. Stay away from processed foods. I've had this disease for 25 years, and I feel so much better now. It's been a long journey, and now I'm having problems with dry eyes, and IBS. My joint pain is 95% better with the right diet.
Thank you all so much for your comments.I have now had a definate diagnosis of FMS.At last,someone believes me.To the writer who gets night sweats,you are not alone hon,I change the pillpow cases every day,its so difficult to sleep,and yet the one thing we need is plenty of sleep!
I do ok at putting up with most aches and pains,but the big flare ups are another matter,then its a case of every movement being agony.Im so pleased ive found this sight,i dont feel alone now,over dramatic as that may sound,its true,so many thanks to MedHelp.My next step is to find a support group near my home in the UK.
Hugs all round.medium
I do ok at putting up with most aches and pains,but the big flare ups are another matter,then its a case of every movement being agony.Im so pleased ive found this sight,i dont feel alone now,over dramatic as that may sound,its true,so many thanks to MedHelp.My next step is to find a support group near my home in the UK.
Hugs all round.medium
Dry eyes could be a symptom of Sjogren's syndrome. I agree with the poster above... definitely get worked up for autoimmune diseases and get your thyroid checked.
As far as the CFS/fibro diagnosis. Don't let the name "Chronic Fatigue Syndrome" fool you. CFS affects your endocrine, immune and nervous system. Recently the CDC launched their awareness campaign and publicly announced how disabling CFS can be.
I would suggest seeing a Ruematoligist(sp?) for Fibromyalgia chronic Fatigue, Lupus etc. Have you had a thyroid blood work-up yet? That is something to consider. It takes an average of five years in some cases longer to get a diagnosis for the above things. They easily fall through the cracks and sometimes you get a doctor that doesn't even believe in Fibro/CFS. You are not crazy, it is not all in your head and don't give up. You may eventually need some counseling because long illness' and chronic illness' will cause depression and that is something you shouldn't ignore. Good luck & keep us informed.
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