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47 Replies
Jocelyn - April 13

cueball,

I'm so sorry to hear that you are so unwell. I agree with KVC33, that it is possible that you have been misdiagnosed or that you may have overlapping diseases. A new doctor may be the best place to start.

Are you on disability? I live in the United States, and I have medical insurance through my company so my medical care is excellent, but my mother was on Medicare and went to one of the largest medical hospitals in the United States to be treated for Cancer. They accepted her Medicare and she was not billed for anything and she got the best care ever, they have the cutting edge tools etc. I'm not sure a smaller hospital would have done that. Perhaps you have a large medical hospital near you. It is worth a try. I've switched all my doctors to doctors that are at this medical hospital. I feel the medical care is top rated and people from all over the world come here to be treated and I figured, I live right near one of the best hospitals in the world, so why not use it. All the doctors work right in the hospital so it makes it easy and they are all connected by networks so each doctor know what the other one it doing. I don't know where you live, but there must be a great hospital near you.

Please let me know if I can help you with any information pertaining to medical doctors, hospitals etc.

 

becky v. - April 23

Hi Cueball, I must say that I too agree with KVC33, I was thinking 'shingles' as I read your post. Did you have Chickenpox as a child? That's how the virus gets inside of us, and lays dormant for years, waiting to strike as Shingles. Which means that most people are walking around harboring the virus that can cause shingles. The other thing that came to mind as I read your post when you were talking about hot, hot water giving you some relief from the pain is have you ever heard of or tried Capsaicin cream? It can be quite useful for the kind of pain you describe, burning, excruciating nerve pain. I thought of that because somehow it works by creating a burning sensation, much like the one you get from the hot water. It's made from a substance found in hot peppers, and is available OTC and by prescription, the prescription strength is likely stronger than the OTC preparation. It could be of some help, I hope it is. I hope you find answers, but most of all I hope you get some relief.

 

cueball1958 - April 23

Thank you so much for the suggestion. I am willing to try ANYTHING for this pain and burning. I will go buy some today! God bless you! Both my feet and lower legs are burning like fire this morning. I do have the Shingles virus. I had a major flare up way back in 1989 and haven't had a flare up since then, but it was very bad, I couldn't walk for 2 weeks, it was in my left back, rib area and the blisters never surfaced, they stayed under the skin, the drs could see them on an x-ray. He said that's why it knocked me down so, because the virus attacked those muscles in my back. I had to literally crawl to the bathroom and back to the couch for 2 weeks and my husband (now ex) was out at sea (Navy man) and I had 3 daughters to take care of. Thank God my oldest daughter was 11 at the time and she would get up and get them all ready for school and she made sure they all had baths at night and she fixed dinner for them and for me every night. I don't know what I would have done without her. I tried to get help from the Navy Wives' Club and they were too busy with their meetings and socials to help me. Nobody ever even came to the house. I was so disappointed in them. It was because I wasn't a member. I was too busy working and raising kids to be a social butterfly. Anyway that was another life, a long time ago. We got through it, so I do have the shingles virus living in me. Never thought about going to the dr and having them test me for it and to get meds for it. I remember the meds really worked but I also remember that after 2 weeks I was fine. I have had this neuropathy with the burning for over a year now and it just gets worse and worse and is showing up in more and more places, my upper arms, my hands, my toes. everywhere, even my back and hips. I can't afford to take off work to have a bunch of tests run or for any long term treatment. So I basically just have to live with it. My health insurance has gone up to a $1,000 deductible for the year and drs now make you pay your 20% up front before they will even treat you. Thanks again for the advice. I try my best to treat myself as much as I can because I can't afford drs and prescriptions. God bless.

 

kvc33 - April 23

Be very careful with the capsaicin. It was hell for someone I know who had just recovered from shingles. You will feel like you are on fire. (I know you already do). As well, if you try to wash it off with water, it just intensifies the burning so you are stuck with it. If you are going to try it, try one with the least amount in it on a very small area and have a dry cold pack standing by if you need it.

 

rnsarah32 - May 8

I KNOW THIS IS LONG AND ANNOYING TO READ BUT PLEASE READ AND HELP ME!
I'd like to tell you all my story and I am eager to find out if anyone's story is similar to mine...

I have been having pain for over 5 years. It started in 2007. I had very bad pain in my neck and upper back. Occasionally it would spread to my mid and lower back but mostly it was upper back pain. I knew from the beginning it was a muscular problem. I felt the pain in my muscles. The pain was deep, aching, tight and ALWAYS THERE! I had painful muscle spasms. It was hard for me to get comfortable to go to sleep. I was never in agony, I just always felt shitty.

I went to my PCP who sent me to physical therapy and to get some X-Rays and MRI's (which were normal) he prescribed me some muscle relaxers and told me that my pain was most likely stemming from a depression/anxiety disorder so he put me on a SSRI.

Physical therapy didn't do anything except tell me that my core muscles were weak and that my posture was the problem, so I thought maybe if I worked out really hard and built up my "core muscles" I would feel better. I did this for 4-5 days a week for a year. i LOOKED GOOD but still felt no relief and was still having the same pains... So I got frustrated and when I started a new job I stopped going to the gym and continued to live with my pain.

About two years ago the pain got worse...I don't know if it increased, or if just living with it for years had caused my pain perception to change..but I knew I could not take it anymore and could not ignore it. I saw another PCP who told me to see a chiropractor. I saw a chiropractor until my insurance would no longer pay for it (and it wasn't helping me anyway). By this time I had tried several different kinds of antidepressants (zoloft, lexapro, wellbutrin, cymbalta etc.) none of them did anything for me.

I also tried to see a massage therapist who specialized in "myofascial release" and i payed a lot of money for massage each week until I could no longer afford that either. The massage therapist told me that even though my pain was my upper back, she thought it was my QL muscle causing the problem (QL is in the lower back). She mentioned that every time she would get into the deep muscles the QL would "kick her out" and she couldn't get anywhere. I stopped seeing her because It wasn't helping and I felt like everyone was using me for a paycheck but nobody was helping.

Anyway...my pain was getting worse and I was starting to lose my mind. I had other funny symptoms like cracking joints, stiffness, FATIGUE, bloating, migraine headaches etc. Sometimes I would wake up and my wrists would be hot and bother me but they would not be swollen. Other times my knees would be red and hot, but not swollen....

I also frequently break out in a rash (PINK, FLUSH-LIKE, HOT, not raised, not itchy, not painful) on my body. It starts on my chest and creeps up my cheeks and down to my extremities. I can feel it creep as my skin begins to get hot in other ares. It looks like red, hot, blotchy spots on my chest, face, shoulders, arms, legs, knees.
The rash would come randomly, whether I was happy, stressed, calm, day night, at work etc. It is embarrassing! I would feel it creeping while I was in my car driving to work and I would have my AC on full blast in January because if the cold air blasted on my chest the rash wouldn't spread (vasoconstriction).

So I had enough...I went to a Rhuematologist and she did labs and a MRI and said everything was normal and that my problem was Fibromyalgia. She told me my only options were lyrica, savella, or cymbalta. I had previously tried Cymbalta which did nothing, so I tried Savella...I ended up being allergic to Savella. Finally I tried Lyrica and it didnt help and made me feel really dumb and twitchy.

I was at the point where I was ready to kill myself I was suffering so much. I was in pain, had migraines, was irritable, couldnt sleep bc of the pain, and breaking out in a rash every other day....

My last resort was a neurologist that was highly rated for fibromyalgia/myofascial pain...i have been seeing him since last summer. He is convinced that it is not fibromyalgia....that it is myofascial pain syndrome.

He is also convinced that whatever all this is, it is stemming from my lower back (HMMM..just like the massage therapist?)
He believed the problem was my psoas muscle tho, not the QL.

I believed him over all the other doctors that I saw because I DID HAVE HUNDREDS OF TRIGGER POINTS ALL OVER MY BODY.
SO.....he has been giving me Botox injections into my psoas muscle. He says that once the muscle relaxes then all of the other connected muscles and trigger points will relax. It helps a little but I still feel like I haven't figured it out yet. I KNOW THERE IS A CONNECTION!

Finally, the last time I saw my gyno I admitted that it hurts a lot when I have sex (which i always thought was because my husband was larger and i have fibromyalgia?) My gyno said I should get a Laparascopy and get tested for Endometriosis.

On Friday I got the Laparascopy and it turned out that YES, I had mild Endometriosis. The gyno lasered off a lot of the adhesions. He told me afterwards that most of the lesions were on the back of my cervix and connected to my organs/muscles behind my uterus. I have a follow up appointment with him next week to talk about what my options are.


DO YOU THINK THAT MAYBE IVE HAD ENDOMETRIOSIS THIS WHOLE TIME AND THAT HAS BEEN MY SOLE PROBLEM?
Maybe the endometriosis (which had settled posterior to my uterus/cervix) has caused my muscles to go into spasm and has triggered trigger point after triger point until my whole body was out of wack.....Maybe the rash is a hormonal thing?????

What do you think? Has anyone been in this situation? What was the outcome?

 

cueball1958 - May 8

I had a hysterectomy when I was 24 yrs old because of endometriosis. I was diagnosed with fibromyalgia when I was 37. I am now 54 and the pain in my body is so bad today that I can barely work anymore. I make myself get up and go to work because I only have 6 more yrs in order to be fully vested where I work for a full retirement check. Thank the good Lord I have a sit down job with few physical demands. I have tried everything under the sun for pain and help. Nothing helps except 800 mg Motrin or some other aspirin based product which hurts my stomach so bad that I can't take them either. Saying all that and from years of studying my own body, (I have pretty much the same symptoms that you have, the burning, hot, pain all over, especially in arms and hands and feet and legs and the pain in my upper back and neck),after seeing dozens of drs, I have concluded without their help, that this all comes from the spine. I can bend my head down and put my chin on my upper chest and the pain just radiates all over my body and it's especially bad when I stretch my spine out and then everything starts tingling and burning more. There is something wrong in the connection between the spine and the pain part of the brain (maybe in the stem). There is a brain stem at the base of the head and that attaches to the spine, so it makes perfect sense to me that there might be a problem with the brain stem that sends the pain signals to the rest of the body. Our pain part of the brain never turns off. Sometimes I want to just give up but then I look at my beautiful daughters and my precious grandchildren and I realize that God wants me here for a reason and I give Him my pain and ask Him to please not let me suffer anymore than I have to. I think about how much He suffered on the cross for my sins and that because He did, I am guaranteed an eternal home, free of pain and suffering and no matter how much I have to suffer on this earth, heaven will be worth it all, because it will be FOREVER! He knows how much I suffer. I know that a lot of people don't even believe in God and they ask, if God loves us so much, why does He let us suffer so much? Truth is, I don't know, except that sometimes we have to suffer for the sake of others, to see God's work, for God to work in their lives. It's not about us. It's all about how we treat others. If we seek God FIRST, He'll take care of the rest of it. He promised. I will not let satan and his army try to destroy my joy. Lot of people call me crazy, a Jesus freak, well, I am a Jesus freak and a proud one at that! So if He wants me to live in pain until the day I die, that's what I'll do. Someday maybe He'll give the drs the wisdom to figure this all out, that's what I pray every day, for someone to figure out what causes the physical pain we have to endure. I for one think that it's in the foods we all eat. When I was young we never ate store bought anything, full of preservatives and chemicals. Now everything is full of preservatives and chemicals. We were never sick growing up. Not until we stopped eating fresh vegetables and fresh proteins and fresh everything. That's when we started to all get sick. Sure there were flu epidemics and things like that but never once did I hear of anyone where I grew up, living in constant pain (except for those who had arthritis). I also have arthritis and put that on top of the fibro or whatever this is and my pain gets so bad sometimes that I want to cut my arms and legs off but instead I get in a really hot tub and stay there until the water gets cold. My daughter gives me a massage at every opportunity (how blessed I am to have a daughter who is a massage therapist). Most drs don't even believe that someone can just live in pain 24/7. They say it's all in our heads, well, guess what, it is, it's in the pain receptors in our brain. I empathize with you and your pain and I will pray for you. The rash sounds like lupus. It can cause wide spread pain. Have you been tested for lupus? there's also a condition called neuropathic dystrophy that I want to be tested for. It's in the spine. It causes the burning and pain in the legs and arms and hands and feet I think. But I still think it comes from the spine. And I'm not letting anybody mess with my spine. I would rather live with the pain than take the chance of never feeling anything. When the weather is bad, when rain is coming, like today where I live, the pain is so much worse due to the gravitational pull on the body due to the barometric pressure. All I have to do to feel pain today is sit and it's there, throbbing like a toothache. If it just barely blow on my skin, the pain is so bad. My whole body feels like a big bruise, like someone has beat the hell out of me from head to toe. I pray for relief for you soon.

 

Jocelyn - May 8

I will pray for you too. I too have lots of illnesses and the only that helps is 9 Advil a day. My doctor did give me something for the stomach because he said the Advil will kill it. Well, so far so good, but I'm sure in time my stomach will not be able to take the Advil. My pain, I feel, is from the spine, by the lower spinal area. Lower back and legs. I have an elevated sed rate and my C-Reactive Protien was 6.3, not good. That means there is inflammation in my system. I do believe Fibro causes spinal inflammation and that causes us so much pain. Of coure it is only a theory, but if the inflammation in the spine went away, upper and lower, all the extremities would feel so much better.

 

iliveinpain - June 13

I found this thread at the absolutely right time that I needed it. I'm home sick from work today. I left early yesterday too, due to a severe fibro flare-up.

I don't get the burning that Cueball has described here, but I do have a friend who experiences that burning. Her doctors have never been able to get to the bottom of that either.

I suffer everyday, some days of course are worse than others. I try to do as much as I can on my better days, which often result in a major setback afterwards.

My pain is also, from head to toe. A get a lot of headaches, and most of my pain originates in my upper and lower back. I believe, as others have mentioned, it is originating from my spine, as well. Just sitting here now, I feel like my back is breaking, and I'm just sitting!!

I get pain that radiates down my arms and into my hands, down my legs into my feet. My neck is a mess all of the time. I get tooth pain that comes and goes. When I've mentioned this to the dentists, nothing can be found on x-ray, so I think there is a problem with the nerves there too.

I go for weekly or every other week massage therapy and feel as though I'm throwing away my money. For example, I had a massage on Saturday, and on Tuesday, I was in so much pain, I couldn't work, I had to leave my job.

I've been doctoring for so many years without receiving any real help. I've been tested, and x-rayed and MRI'd for everything, been on tons of medications that didn't work, and everything always comes back to being a diagnosis of fibromyalgia.

I'll be 58 in a couple of months, and this has been going on since my early 30's. I wasn't actually diagnosed until I was almost 50. I do think that as I'm aging, I'm beginning to feel much much worse. At this point now, I'm just living for retirement. Even if I take early retirement, I'll have to work 4 more years and the thought of going in for 1 more day is so hard for me.

It's ridiculous trying to get out of bed in the morning. Unfortunately my boss is a real jerk who lacks compassion. I'm trying to work it out with him right now to see if I can cut my hours enough to give me more of a break during the week, while still being able to maintain my health insurance. Unfortunately, in the United States, we have to work for insurance. If we can't work, we can go on cobra, which costs a fortune. I looked into buying health insurance in the event I became unemployed, and as soon as the insurance companies hear fibromyalgia, it's an immediate decline. I called Allsup today to ask about trying to obtain disability benefits and was told I have to stop working for 30 days in order for them to begin the process. It's kind of scary to voluntarily give up my source of income in the hope that I MAY be able to collect. What if I can't? What then? We are really all in such a bad circumstance.

I've lost my family over this. I have no contact with my mother and brother because I could not keep up appearances of the perfect Norman Rockwell family to the outside world that they insist on maintaining. When I told them I had to cut back, not stop, just reduce the frequency of visits and scale back on hosting of holiday parties at my home, I was called lazy and my brother even went so far as to refer to my condition as my "SUPPOSED" pain! That cut as deep as anything ever has.

I get so tired of people thinking I'm just lazy or flat out lying! I am always having to say no or cancel plans with friends and family, simply because I just don't feel well enough, either with the extreme fatigue, or the pain. Usually, it is both!

I dread going back to work tomorrow and facing my boss. The stress of anticipating this is giving me more trouble today. I even went as far as sending him an email with a link to this site, so that he will hopefully learn something about my illness, but I doubt very much he'll do that.

It's a weird thing that happened here, much synchronicity at work, because I signed in today and started a new post that somehow got lost in cyberspace. It was pretty much asking others for their stories, and then I saw this. It's helped me a lot today! It's a horrible thing we endure every day but it is comforting to know that we're not alone.

 

Jocelyn - June 13

It sure is a horrible disease. I am 56 and have at least 5 1/2 more years before I can retire. Everyday is a struggle and doctors are challenging with their meds and stuff. I have had problems since my early 30's and was told it was all in my mind. Well, now things have progressed and doctors now believe there are problems that they cannot diagnose and they call it Fibro etc.

Anyway...muscle massages haven't helped my friend very much, except that they feel so good while she is having them done.

I took a different route and went to a physical therapist who does the horrible deep muscle massage and it is so painful I almost quit. But, then I noticed that some of the pain was relieved. He also used lazer therapy and that helped even more. I am doing much better than last year.

Stress from a job does not help, it only makes it worse. I live in the United States and I carry the insurance, not my husband, so I need to keep working. I am hoping beyond all odds, that I can make it to 62, then my benefits from this company will kick in and they will pay 50% of my medical until I am 65 and can go on Medicare etc. This will be a great help if I can make it until then. I just don't know. I have to take one day at a time. And like you, if I do too much I will pay for it later.

I am sorry your family is not understanding. My mother had Lupus and she knows what it is like to look well, but feel awful. People don't understand. You family needs an overhaul in attitude. It is awful when family turns their back and doesn't believe you are sick. That is awful stress too!

As we age, it seems the pains get a grip on us. When I was younger the pains were there but less intrusive, now they are HERE to stay. Physical Therapy is helping if you get to the right PT. If you don't, it won't help. Then again, we are all so different, what works for one doesn't always work for the others.

I am trying to stay away from the harsh drugs, if at all possible. So far, prednisone for my Sjogrens and Advil for my Fibro. I hope I don't have to increase anything else!

Take care and stay in touch.

 

cueball1958 - June 13

Search the internet for dermatomyositis and read about it. You can find it in wikipedia. It sounds more like how I feel than fibromyalgia, which I'm sure I have, but this stuff I have is more to it than that and it is progressing. Why hasn't a single doctor I have been to ever even thought of testing me for this. Read about it and let me know what you think, if it's something that you deal with or live with as well.

 

cueball1958 - June 13

I just happened to come across this condition and started reading about it and it sounds so like me. I'm going to go to a dr as soon as possible and make them test me for it.

 

valjoy - June 14

Hi liveinpain, I feel for you as we both have the same symptoms. The burning of the skin is just horrendous and I have it in the vagina and it has been there for over 3 years now, just came one day and never left. I was under a lot of stress at the time though. I have just moved from the bottom of Australia where it is cold, wet and damp up to the middle of Australia where it is much milder, not damp and very warm, the dampness is not good for fibro. I have been here 3 weeks now and have even been to see a lovely Rheumatologist, in Melbourne they wouldn't refer me to one as the local Dr. said there was nothing wrong with me, I needed to excercise more and take hormone replacement which I did for 18 months and still feel terrible. The lady up here did a strong of x-rays and blood tests and I do have fibro plus rheumatoid arthritis. I was shocked at that. I am on Plaquenil for the arthritis and Nortriptyline for the fibro, she said it can take up to 4 months to work but it will work. I don't have to go back to her for 4 months now so am patiently taking her medication. You need to maybe see a rheumatologist, give the local Dr's a miss, they don't understand. Keep searching. Love and hugs, valjoy.

 

Jocelyn - June 15

Valjoy is right. If one doctor doesn't work, look for another. My search was long and hard, but I am finally on the right track. Fibro, in my opinion is not just one disease but a combination of people with different chronic immunological issues that no one can explain why they are happening. I truly hope that some day someone will figure it out and realize that Fibro is made up of many hidden diseases and that if you separate the symptoms instead of bunching them together, the results may prove more promising for people like us. I did that to myself and have had progress. Good Luck and Stay Well

 

lauriellc - August 13

I just read your post rnsarah32. I have read that endometriosis is something that firbromyalgia patients have a problem with. This is my story: I was diagnosed with the "Asian Flu" in January of 1981. I was 12 years old. I was in bed for 3 weeks with fatigue, aches and pain that also included fever. I believe I actually had mononucleosis as last year I tested highly positive for the Epstein Barr virus. Within 2 years I began having unusual disorders and issues. I broke out in hives from head to toe, I began having vaginal issues and I was not sexually active, I also began having problems with my lower back going from being able to do 50 sit ups to zero (I still cannot do sit ups today). With my back I was told Scoleosis and that I had a vertebrae missing in my lower back. I was married in late 1986 and gave birth to my first child, a boy, in December of 1987. During the pregnancy I suffered weight loss and stomach problems. The interesting thing is that the actual delivery of my son went very smooth. Soon after I gave birth I was diagnosed with IBS (irritable bowel syndrome). I continued to have back problems and after seeing an orthopedist was told that I should never have any more children and that I actually have rheumatoid arthritis in my lower back. I decided to ignore the orthopedist as it becomes very hard to trust each doctor's opinion when they constantly contradict each other. My second son was born in 1994 and my body reacted similarly, difficult pregnancy, easy birth. I am on video tape with my second son where I am doing my breathing but hardly make a sound. My back actually got better after the pregnancy and birth (maybe a remission?). Within a few years I found myself having vaginal/uterine problems again. Diagnosed with endometriosis, HPV, lesions and stage 3 cervical cancer. The lesions were removed and after several checkups over 3 years I was finally cleared of the cervical cancer but told later that I did not have HPV(????). Again, doctors contradicting each other. I had a bout of shingles in 2001. The endometriosis flared up again and in 2006 and a surgery was done to burn off the entire lining of the uterus. This was supposed to stop all periods but it did not. About 3 years ago (2009) I started to notice a lot of pain. I was slightly overweight (BMI of approximately 29) at 180 lbs. and 5' 6" tall. My cholesterol is naturally high, I also have high blood pressure. My doctor insisted that my pain and all these other problems would go away if I lost weight. I started an exercise and weight loss regimen in early 2010 and immediately began having bladder problems and within 8 weeks I broke my foot because of what seemed to be an uneventful fall. The break was a twist fracture and completely separated the bone. I had already lost 20 pounds by this time and still no relief from pain (and the broken bone, crutches, cast, etc. did not help). After the broken bone I began to realize there must be more to my problems than weight. I began researching my symptoms (many of which you have mentioned). I actually thought I had multiple sclerosis or of course, problems related to the earlier diagnosis of rheumatoid arthritis. I kept going into my doctor and I finally was sent to a neurologist and after numerous tests I was diagnosed with fibromyalgia. Simultaneously I was sent to a gynecologist and when he could not enter the uterus because of the excessive scar tissue he sent me for an ultrasound of the uterus. I had 4 tumors on the left side of my uterus and a bleeding cyst on my left ovary. Because of family history it was decided that a full hysterectomy was necessary. This ended up being a distraction; although, it did solve some major problems with the endometriosis (which had returned) and the tumors putting pressure on the lower back and bladder probably adding to my fibromyalgia problems and also related to those problems.

I honestly believed that after the surgery my problems would all go away and for a while they did. Unfortunately, in April of this year the old symptoms began their reappearance with a vengeance. I suffered costachondritis (sp) which is the tearing of the muscle around the sternum (in the chest). I thought I was having a heart attack. Luckily it wasn't and a chest x-ray revealed that I was not crazy as it was in the middle of the night and I had to rely on my husband to believe me and take me to the hospital. Over this last weekend I tore one of my calf muscles, the gastrocnemius, and could not walk. I simply stepped off of a curb and after a loud pop suddenly I could not take one step without severe pain. Although better each day I am still in pain now and had to leave work early. I am suffering from a rash today and summers where I live (typically over 100 degree weather) are horrible for me.

I continue to suffer from random hive breakouts (Benedryl usually solves this problem) and my shoulders and neck are often sore along with a headache on the left side of my head.

Some of the strongest people I know suffer from this condition. My husband has watched me through all my problems and would argue that I am strongest person he knows. The problem is that the doctors I have dealt with (mainly Kaiser Permanente) want to contribute my problems to stress, weight, being sexually abused (I have not been but I was told that everyone that has Fibromyalgia has been????), along with not having a high tolerance for pain (what?).

The things I do know about me, when under stress I handle it well emotionally and mentally - even complimented regularly on how I keep my cool. My body reacts to the stress. How do I control that?

My weight today is still around 160 pounds. I wear size 8 and size 10. My BMI is about 26. I know a lot of people who weigh more, are much larger and in poor health. They do not suffer the way that I do. My cholesterol and blood pressure remain the same - still high.

My concern now is how do I stop the muscles from tearing? As noted in other posts exercise is difficult and you can also see that it doesn't take much to make mine tear. I have given up on the doctors and in reading my post one could understand why.

I hope this lets you know that there are similarities to you rnsarah. I also would like to point out and wonder if this isn't a common thread that this is somehow related to the Epstein Barr virus (mono). Even though I was improperly diagnosed when I had it - because of its severity I know exactly when I had it since I obviously have because of the blood test). I believe that all of my symptoms and ongoing problems are related. My doctors do not believe that though.

I am Laurie, I am 44 years old, I was diagnosed in April of 2011. Although my family is supportive I cannot find anyone in the medical community to help me connect the dots.

I am so sorry for all the people that have posted that have this condition. I am blessed to have my family so supportive. I think this disease is much easier to deal with and live with when even one person you see every day believes and believes in you.

 

Kitty35 - August 15

I just found this site and forum today or rather morning. (please forgive any spelling now) I was diagnosis with FMS in 2000 and have been trying to live one day at a time. I am 35 years old but feel like I am a 100. My doctor has tried my on all the newest medicines and they do not help. Oral medication barely keep the pain level under control on a good day, heaven help me on the bad ones. Point injections stop working years ago. I had been getting Botox which worked, but insurance does not cover them anymore. I am apparently getting the last last treatment they know to do, for now at least, which is Lido infusions. I will keep getting these every month until they no longer work or they become toxic to me(lovely).

All I know is that for a while my symptoms seemed to have been under control then just all of a sudden, 3 years ago everything fell apart and can not seem to level back out. More just piles on.

I have gone from the whole body aches and OMG pain, RLS, numbness in legs, and not being able to sleep to now: (what the doctor knows)

partial seizures
blood pressure so low they barely can get a reading
heart rate so low low it set off the machine
newly diagnosis sleep apnea
falling several times a week
Carpal tunnel

What I have to report next visit because it has just started:

hard to stay on task--forgetting what I am doing
general memory loss
skin senitive to touch--I do not want to be touched it plain hurts
muscles are the same way--hurts like all get out to be hugged
headaches have returned 10 fold

Can anyone recommend something that I can do to get some relieve!! I do not know how much more of this I can take. I have tried PT, chiro, Massage(that hurt could not stand to be touched), and I exerice 3 times a week to try to keep moving.

 

dotcomsp - August 20

I also just found this site and wanted to post for a different reason. I am 46 and had suffered from an undiagnosed illness for the past 20 years. Like many people on this forumn, I tried physical therapy, chiropractics,massage therapy, pain medication, fancy medical devices and trips to specialist from neuro to back surgeons all to help diagnose and assist with my reoccuring pain episodes. At my low point about a year ago, I could not sit for more than 10 seconds without pain shooting up my neck and even the sheets on the bed hurt when I tried to lay down.

Then I decided to go to see an acupuncture guy down the street. Literally, a last ditch effort and I picked him out from the sign on a stip center close to my house. Was I ever so lucky, turns out in 5 minutes of discussing my medical history with him, a few pokes in some very painful trigger points and low and behold he tells me I have Fibromyalgia. I then go to my Internist the following day to discuss the diagnosis and she tells me that there is only one PA not even a doctor in all of Houston, Texas that is a specialist in Fibromyalgia and that we could run a lot of additional tests to try and preclude other potential problems but that there may not be a conclusive result and that I should try the accupuncture and see if it helps.

Now here is the kicker, to quote the accupuncture doctor he said, "I can treat that" and in 2 weeks after just 4 sessions (and yes they were painful with lots of needles everywhere) and doctor recommended exercise (walking/jogging), I am happy to say that I was 90% better. I continued to go every week, then every other week and now I go when it starts to flare up. I may go once a week or once every two months, just depends. Anyway, the point is that if you have not tried accupuncture, I would highly suggest it especially if you can find someone as good as the one I have (MD with focus on ObGYN, Master at Accupuncture and some fancy herbal degree also). I am not much into the herbs or pain medication since the accupuncture by itself works so good for me.

Just thought I would share. I can provide his name and number if anyone in Houston is interested.

 

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