Fibromyalgia Support Group
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Hi all,
I have all kinds of autoimmune issues since I was dxed several years ago with Epstein Barr Virus. This was the second time I had EBV so it came with a lot of consequences. My doctor told me I would end up getting quite a few autoimmune disorders. Fibro isn't an autoimmune disorder but it does ride in on the coat tails of other disorders. I am pretty sure my Sjogrens caused my fibro.
But, when my doc told me I could expect lots of autoimmune disorders I asked him to give me examples. The first one was RA and the second one was MS. Despite this warning I never really have MS a second thought. Then about half a year ago I started having hard core symptoms of these small symptoms I had been having for years.
I googled these symptoms and every single time the first items to come up were about MS. so, yeah, I began to become concerned. I didn't freak out cuz although MS sux it doesn't kill you anymore. I had always been way more scared of lupus. So I had the MRI done and they found lesions but they were called small vessel ischemic damage. I even had a second opinion by a MS specialist who didn't charge me anything. He stated that there was no sign of MS.
SO now my questions are: Have any of you had any problems with the heat or the sun? You see its very common for MS people to have heat related issues. They are very heat intolerant. I am wondering if fibro people might experience it. I am also very heat intolerant. I can not handle being in the sun for ten minutes or so. I always feel like I am going to faint when I am in a store with bright florescent lights. I live in the Hill Country of Texas, but it might as well be in Central Texas as hot as it gets with absolutely no humidity...just like a hot oven.
My other question that also has a lot to do with MS people is rib pain. MS people have what is called MS hugs. They involve the intercostal muscles between ones ribs. They contract and the sufferer feels as if a giant boa constrictor is squeezing them. It is one of the most painful things I have ever felt. However I must have felt something else because my brain scan says no MS. so does anyone here ever have horrible, very painful squeezing pains in their ribs? Mine was right where my floating ribs are on both sides and also the rib area under my arms on both sides. When my doc told me I didn't have MS I asked him what caused the horrible crushing rib pain and he had no clue. He told me I was heat intolerant cuz lots of people were. He said I should stay in the water a lot during the summer.
If anyone could help me out with these two questions I would be so grateful. Thank you!!......Irish
I have all kinds of autoimmune issues since I was dxed several years ago with Epstein Barr Virus. This was the second time I had EBV so it came with a lot of consequences. My doctor told me I would end up getting quite a few autoimmune disorders. Fibro isn't an autoimmune disorder but it does ride in on the coat tails of other disorders. I am pretty sure my Sjogrens caused my fibro.
But, when my doc told me I could expect lots of autoimmune disorders I asked him to give me examples. The first one was RA and the second one was MS. Despite this warning I never really have MS a second thought. Then about half a year ago I started having hard core symptoms of these small symptoms I had been having for years.
I googled these symptoms and every single time the first items to come up were about MS. so, yeah, I began to become concerned. I didn't freak out cuz although MS sux it doesn't kill you anymore. I had always been way more scared of lupus. So I had the MRI done and they found lesions but they were called small vessel ischemic damage. I even had a second opinion by a MS specialist who didn't charge me anything. He stated that there was no sign of MS.
SO now my questions are: Have any of you had any problems with the heat or the sun? You see its very common for MS people to have heat related issues. They are very heat intolerant. I am wondering if fibro people might experience it. I am also very heat intolerant. I can not handle being in the sun for ten minutes or so. I always feel like I am going to faint when I am in a store with bright florescent lights. I live in the Hill Country of Texas, but it might as well be in Central Texas as hot as it gets with absolutely no humidity...just like a hot oven.
My other question that also has a lot to do with MS people is rib pain. MS people have what is called MS hugs. They involve the intercostal muscles between ones ribs. They contract and the sufferer feels as if a giant boa constrictor is squeezing them. It is one of the most painful things I have ever felt. However I must have felt something else because my brain scan says no MS. so does anyone here ever have horrible, very painful squeezing pains in their ribs? Mine was right where my floating ribs are on both sides and also the rib area under my arms on both sides. When my doc told me I didn't have MS I asked him what caused the horrible crushing rib pain and he had no clue. He told me I was heat intolerant cuz lots of people were. He said I should stay in the water a lot during the summer.
If anyone could help me out with these two questions I would be so grateful. Thank you!!......Irish
I don't have MS so I don't know much about that. Fibro can cause all kinds of weird symptoms- part of the nervous system is in overdrive.
I think there is a MS group on DS maybe they could be of help.
Hope this helps
Alena
The cause is unknown & the condition usually resolves itself without treatment, but in some cases local injections of corticosteroids are required. "
My fm research paper says, Re: Chest Symptoms: Individuals with Fm who engage in activities involving continuous, forward body posture (i.e., typing, sitting at a desk, working on an assembly line, etc.) often have special problems with chest and upper body (thoracic) pain pain and dysfunction. The pain may cause shallow breathing and postural problems. They may also develop a condition known as costochondralgia (also referred to as costochondritis) which causes muscle pain where the ribs meet the chest bone & is frequently mistaken for heart disease. Persons with FM are also prone to a largely asymptomatic heart condition known as mitral valve prolapse (MVP) in which one of the valves of the heart bulges during a heartbeat causing a click or murmur. MVP usually does not cause much concern unless another cardiac condition is also present. (Note: Anyone experiencing chest pain should consult a physician.)
I hope this helps. It is a little scary to read but it still may be something else altogether. So, good luck and makes sure your Doc knows what it may or may not be for your own peace of mind. Also tell him to send you to a Cardiologist too! xxxoooo's
" heat, wind, and damp", is how a Traditional Chinese Medicine Doc, explained it to my local FM group plus Barometer changes, Perfumes and Colognes, Scented products,or MCS =(Multiple Chemical Sensitivities), temperature changes, loud sounds, & to being bumped or touched, and florescent lights can cause headaches for Fmers, etc., too! xxxoos
Try to get a sleep study, a sleep specialist. Good sleep is crucial for us to cope with this terrible disease.
I would like to thank all of you who have taken the time to read my long winded post and given me such wonderful responses!!! I really can't thank you enough because you have given me a strong sense of peace. For so long I thought I had MS, because all my symptoms sounded so much like MS symptoms. Doctors and just people in general never seem to understand that when we are told there is nothing wrong with us we don't jump up and down with joy. When my doc told me I did NOT have MS, I guess I must have looked disappointed because he said, "whats wrong, aren't you happy? Did you want to have MS?" Of course I don't want MS!! All I want is to know what is wrong with me so I can take proper meds and begin the hard work involved in getting well.
I truly appreciate all your advice and your sharing of your stories. It has helped me so much. At least now I have an idea of what is going on with me. I hope that I will be able to help you all someday as well.
Friends,
Irish
hang in there vent when you need to it does help
take care
x
Thanx so much for your reply! It does suck having fibro. Its really weird cuz I was dxed over two years ago and I am just now realizing how very little I actually know about it. Plus I have Chronic Fatigue Immune Deficiency Syndrome and I have just found out that I am banned from giving blood because of it! I will have to do major catch up in the research department.
Yes, I am very happy that I don't have MS. I was really scared about it cuz I have literally ALL the symptoms of MS. But now I amrealizing that there is so much over lap with all of these sicknesses. Plus don't you think its kinda weird how so many people are suddenly getting all of these sicknesses, like autoimmune illnesses or whatever the heck fibro is considered? All over the world also. Sounds like you are from Australia? You should see the stats for MS in the Scottish highlands because they don't get much sun there and so they are lacking in Vitamin D, they do know for a fact that one of the causes of MS is lack of VITAMIN D. Thats one of the reasons I thought for sure I had MS is cuz I have almost no Vitamin D. Plus I had Epstein Barr Virus and thats another theory bout the cause and my grandma had a sister with MS. oh well I am just glad I don't have it. Thanx again x and I am sure we will talk again some time!
Friends,
Irish
live in christchurch where the earthquakes have been the stress has caused massive flare dont see it ending any time soon either oh well such is life take care x
I guessed because of the way you "talk". So much cable tv and we like tho watch Discovery channels, the Food Network and the Travel Channel. So I am really exposed to much more culture AND accents then would ever have been possible before with out cable. I am so sorry that you are having to go through all the earthquakes and fires right now.it does seem like there is some kind of horrible natural disasters going on.
Here in Texas where I live we are in the middle of tornado season. Tornadoes are really scary cuz the weatherforecasters can't track them like slow moving hurricanes. That is why we have "storm chasers". They spot tornadoes and chase after them in their vehicles and let everyone know where they are going! Plus the Ham radio operators. If we didn't have these then many people would die. Wejust had like 10 tornadoes in the Dallas area the other day and not one person died. Of course this summers wild fires are going to be much more horrific than last year cuz its supposed to be hotter this year than last year. Did you know that wild fires can start with something as simple as a broken piece of glass sitting in dried, dead grass or weeds, and that piece of glass will reflect the sun and WHAM!!! That is all it takes and a whole neighborhood can go up in flames. Last year the fires were so close to us that my husband had to soak spray our roof with water and I had to get together things wee really wanted in case we had orders to evacuate.
Your right though. Nothing we can do. It will happen any way.
Friends.
Irish