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May 12
2008
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I have had Fibromylagia-FMS for 8 years (along with other things I hope to discuss at a later time), but only recently diagnosed with Chronic Fatigue Immune Syndrome-CFIDS or CFS.
I hurtmy neck 8 years ago and went through all the standard testing. I(WE) who have FMS/CFS know that the standard test doctors perform are usually ok. I would like to share my MRI from 8/18/2000:
I have mild kyphosis of the cervical spine centered at C4-5 level with diffuse disk bulge at C4-5 which is slightly eccentric to the left. There is no significant central spinal or neural foraminal stenosis.
At C5-6 level, there is a more prominent diffuse disk bulge which is eccentric to the right with impression on the ventral aspect of the thecal sac and minimal distortion on the ventral aspect of the spinal cord. There is no intramedullary signal abnormality within the visualized cercical spinal cord. Bone marrow signal characteristics are normal for age. (* For Age* is a courious one to me since my body is acting 15-2o years older, studies have ben done with people who have fibro have more neuro endings or neuro transmitters in their spinal canal*)
My more recent MRI states about the same thing and the Spine Center tells me my disk are the same (I read the report and it does read about the same except now C-3 is also involved). Doctors still won't do anything for my neck and I continue to have a headache with different severety daily. I recently seen a headach specialist and he put me on topamax with hopes to help my daily headaches. After being on 100mg for about 5 mon and no success, I will be going off soon. I think topamax may have helped to stabalize my weight, so I hope my weight will at least maintain. Topamax made 17 different meds I am on....to many!
My Chiropractor has looked at both my MRIs and has no doubt that my neck was due to an injury, and I now have bone spurs growing on each side of my neck which is the bodys natural way to protect itself. I have had a headache everyday for the last 8 years!I also have 3 other places in my back that has degenerative disk that gives me problems. I had a job at the time that was physically demanding (or was it the supervisor who didn't really like me). ( oh and by the way Workers comp took no responsibility-even in the payments of my medical tests!)
At the time of my accident I didn't understand what was happening to me. I was active young mother who now hurt. The doctor at the time told me I pulled the muscle that held my head up and to go home and lay down. Back then just getting to work and functioning was challenging. I couldn't do/enjoy the things I once did. I did manage to get out of the machine operator occupation since this was going to kill me, and I went into retail. This helped some. Everything always helps at first.
As time went on I seem to be in a Fibro flare up everyday. I hurt, my muscles had bubbles that could be rubbed out only to come back within hours. My head hurt on top of everything else and it was coming from my neck. My doctor would give me some pain pills or whatever at times, but we have all been looked at by some one or another for wanting to be a druggie. Pain pills, muscle relaxants, sleep aids whatever the case. I have disk that push into my spinal canal and fibro and degenerative disk and my doctor still wants to be scarce on things. My biggest complaint was I wanted something for my headaches and my neck/back aches without making me tired because I had to work.
I was tired all the time. I would get up in the morning thinking of getting off of work to take a nap! My doctor just said it was the fibro. Flares I thought would come and go but not stay. Co-workers thought I looked grumpy all the time when I was just concentrating so hard just to be able to accomplish my task at hand. I worked for at least 5 years this way, the whole time just geting more run down feeling hopeless...but determined as if it was all going to go away if I worked harder...acceptance is something I am still working on.
I worked my way up into the company to a postion that was less physically demanding. I worked in Vault/Bookkeeping area of a major retail store. I managed between $120,000 to $200,000 a day for deposit. ( I told you this for later on) I complained to my doctor that my "wake" hours of a day was decreasing. When I got home there was nothing left. He had no answers for me, just said it was the fibro.
I found myself this last year slipping backwards. My memory, cognative skills, getting confused, sleeping more, hurting more, fecal incontanance getting worse. I cried for help to the medical community with no success. I live close to a well known clinic yet they are conservative on their practices. I went to these speciality departments ( You may be able to see the humor)
- The Spine Center
- no change-I was told that "Some people have bulging disk and never even feel them"-I told that doctor he told me that same line 8 years previously and that "I wasn't other people" and "I did feel them" either pinching in my neck or constantly up my neck and causing me a headache on my left side.
- He did send me down to get cortisone in my faucet joints with no success
- Neurology
- I had an MRI-was concerned for headaches and the fluid that would be in my ears when I would get up-all ok
- Wasn't worried about my fecal incontance-"well I sure was"
- I tried to discuss an issue but it was short lived:
- people with Fibromylagia have more neuro transmitters or neuro endings or something especially in their spinal colom and the Neurologist cut me right off and told me that this has never been proven. Yes it has, but he was the expert, not I. (I thought this was a bit vain for such an important position at such an important clinic)(I also thought that maybe this was the reason why I was feeling these disk bulging into my spinal canal as compared to others)
- Did send me to get memory testing done-this was very different and I thought for sure I failed-all ok
- I was in school part time and my homework that would take me 4 hours was now taking me double the amount of time need .
- I was getting confused on elevators of where I needed to go.
- Driving I would get confused where I was going, when I would figure it out I would make wrong turns to get out of the parking lot.
- Always late for work, I am always late for everything anymore.
- One morning I got up and was trying to get dressed and I didn't know what came first my pants or my shoes!
- I was to start taking Vitamin B 12 shots, and I needed to purchase needles. I was talking to the pharmist over the phone. I am going to do this shot 2x a week for 3 months and I couldn't figure out how many I needed to purchase! I was about in tears. He told me how many and I couldn't figure it out! I use to count thousands of dollars daily with accuracy and now I cannot figure out this simple problem.
- Neorology Surgeon
- Told me he couldn't tell where to operate in my neck if a muscle, tendon, nerve, ligament was my problem, so leave alone keep on meds ( I don't want to be on 17 meds, I am starting to get confused doing my weekly meds) I didn't have to do all these meds before I hurt my neck, before I got fibromylagia! Frustrating. Now I do have 1 surgeons opinion though.
- Gastroenterology
- Had me do balloon holding to test my strength of my abdominal floor muscles-are ok
- my fecal incontinence-to quit drinking pop..why didn't I think of this..I did for over a month all caffeine and all artificial sweetners....no luck
- ENT
- Chronic sinus infections and problems with my and teeth with my ears feeling like they were going to blow out- mostly my left side as if it was swimmers ear with headaches and I have had this for 8 years since the accident! The only thing new is the severity of the pressure in my ears and now the wetness in my ears
- Ordered a CAT scan since I haden't had one in 3-4 years-all ok
- The fluid drainage from my ears is probably caused from my headaches. This one sounded to crazy to me! The Pressure who the """ knows.
- Vascular Lab
- I thought I was going to have my upper extremeties done and when I got there my lower extremeties got hooked up. The tech even called my doctor to make sure he didn't want the upper half done as well since I was there and my primary said no.
- This wouldn't be the first time showing up for test where they only "half' tested an area that could have been tested the full area so I didn't have to come back another time a couple months down the road.
- I remember being with my primary care and asking to have my neck checked out. My chiropractor thought I could have (theourasic outlet-sorry about the spelling) and my mother had had a stroke. (My chiropractor had even sent a letter to the Spine Center in regards to this and asked Dr " "' to get back with me, but he never did) My primary care said there was steps and channels to take first. If he just sent me there for my neck and he quit speaking. He set up the appointment for the vascular study-my lower half only come to find out!
- Memory Testing
- My cognative skills were declining and it was more than just for getting where you parked your car. I was actually getting confussed doing things, understanding things. This test was very different. I thought for sure I wasn't doing very well and was getting nervous since I couldn't get the lady to smile at all. This test came back as I am ok too-good thing to know, but I am not ok and something is going on in me and I need help and no one seems to be able to help me....
- Womens Health
- Early Menoupause started at 32, done at 42
- They suggested to go on the HRT patch instead of a pill. Talked with me about several issues and sent me to do a breast exam on my left side only-everything ok.
- Cancer Genetics-since it ran in the family but my chances are not that high of a percentage.
- Physical Therapy
- I was late and he was arrogant and actually told me there was nothing more he could do for me. If Doctor (the referring doctor) would have looked at doctors (the spine center doctor) notes. I felt this was a arrogant comment since I haven't been to a physical therapist since my accident 7-8 years previously. I had been followed up in the Spine Center all this time and I do wonder what the Spine Center notes say and should obtain them. After talking with this therapist for a while he and I did decide he could show me some new exercises to do. I was using my neck muscles incorrectly. He told me that it wasn't uncommon after an injury to learn to use your muscles differently/incorrectly to compensate for an injury.
- Others As well
I am sure many of you with any "invisible disease" can appreciate the above doctor vistis that got me no where after spending thousands of dollars. I know I wasn't ok, so I made a decesion to go out of state for help to the Fibromylagia and Fatigue Centers FFC http://www.fibroandfatigue.com/ I am not working and my funds are running low, so I hope to continue with this. I did my research and this is where I want to be.
I have frustration at the doctors that I have seen for 22 years yet I can see humor in it as well. I got scared not knowing where to turn to and made the decesion to go to the Fibro and Fatigue Center FFC myself with the suport of my doctor as well. As he said, I have had not much help with the medical community-it is a "treatment center" for FMS/CFIDS. He said the success rate at a cancer center is greater so maybe this center will be greater for fibro.
I know I said this but I wanted to say it again. When I was falling a sleep waiting for the doctor to come in to see me and complaining about this makes me know now about CFIDS.
This is what has my interest and passion for learning. CFS is another chronic illness doctors have a hard time diagnosing. The Center for Disease Control http://cdc.gov/cfs/ has several interesting topics and doctors can go there and obtain college credits for learning about CFS and how to diagnose. Left untreated CFS can cause other medical problems.
I was diagnosed with CFIDS by the FFC center. Through my blood work at the center, this is my weakest point.
My passion is to learn about Autoimmune diseaese as well
American Autoimmune is something I recently I stumbled across. My mothers sister, My Aunt Sandi has MS and Lupas which are autoimmune diseases. I love her so much and wish she wasn't going through what she is. I have Fibromylagia, Chronic Fatigue, Raynauds, Allergis Rhinitis which both are autoimmune diseases. Autoimmune Thyroid Disease is interesting since the FFC center just put me on thyroid medicine and Autoimmune Inner Ear Disease is also interesting since I have such problems with my ears and mostly my left one.
They will tell you that Fibromylagia and Chronic Fatigue is not a autoimmune disease, but is on the list because people with FMS/CFS have underlying autimmune problems.
