Discussions By Condition: I cannot get a diagnosis.

Confused by medical care..need advice

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: nakoma
  • October 4, 2008
  • 05:45 PM

Any suggestions would be greatly appreciated......

I was a stay at home mom for years....8 years ago I was told I had Fybromyalgia....I was tired and sore, and just hurt all over....after a few weeks I felt better....and forgot about the Fybromyalgia....

About 5 years ago...I had the same thing happen, or similar...but seemed to be worse....it was a new doctor, who didn't said he wasn't quite sure Fybromyalgia really even existed.....a few weeks went by and I felt better, but this time, it never really seemed to ever go away.

About 3 years, same thing came up...tired, sore, hurt all over, headaches, and back pain that was so bad, I could hardly walk, literally couldn't walk without hanging on to something, or having help...I went in to yet another new doctor, who said...well, could be Fybromyalgia, but we'll run some tests and make sure it's not something more.....all the tests came back ok.....and a couple weeks later, my back was much better, but again, the fatigue, aching all over...neck, shoulders, arms, back, hips, legs.....never seemed to completely go away, and I literally at times felt like I had been hit by a car.

2 years ago, I went thru a divorce...went to work fulltime.....had a couple of job changes in that first year....and finally got a position with an excellent company that I felt was perfect for me, and for my 2 young boys, now ages 10 and 14.....I started that job in September of 07....within a month, I had the worst cold that I had ever had in about 20 years......by December of 07, I literally felt like I was dying.....I was so run down, so tired, and hurt so bad all over that I just couldn't hardly move....up until the week before Christmas, I had not missed any work at my new job....but that week I just couldn't keep going, and went in to the doctor....I had a bacterial infection....which she never did tell me what it was from.....she put me on an antibiotic....it as NOT at that time, mono...but she said that I had had mono at some point before, which she got from a test she had ran.....(recently I read in my file that in December I had bronchial-pnemonia) but the doctor had never told me that that was what I had...not sure why she didn't tell me that...especially because she was concerned about my breathing....when she would have me do the breathing test...where you blow into the little tube...and it moves a little lever up.....I was only able to blow about 1/2 of what I should have been able to.....FYI...even today....when doing that same test....it is the same....

I was off work for about 10 days for that bacterial infection....and although the cold did go away...the fatigue, achy, sore all over never went away.....I went back in for a "recheck"....at that point, I was so tired and felt so rundown and sore....she felt perhaps it was arthritis....more tests....she took me off work for a month....started me on anti-inflamatories....sleep aids....her thinking was, that if I got enough good sleep, I would feel better.....it seemed like I could never get comfortable at night to sleep....back hurt, hips just ached and burned, shoulders hurt and felt like someone was squeezing them......

The problem with the anti-inflamatories....was that my stomach couldnt' handle them most of the time, my gut would hurt, sometimes throwing up from them, I was bloated to the point of looking like I was 6 months pregnant.....a couple of anti-inflamatories she tried I broke out in rashes from...And the sleep aids she gave me, if I took them, I had to have at least 10 hours to sleep because once I took them, and fell asleep, I wouldn't wake up for AT LEAST 10 HOURS...... I didn't have 10 hours straight in a day to sleep! And, I never woke up feeling refreshed and pain free like she thougth I would....if I had...I would have made 10 hours for sleeping in my life!

then....about 2 months into my 3 month leave from work.....I couldn't hardly walk.....my low back, right hip and right leg hurt so bad, it was just horrible! I happen to be going in to see the doctor for a "recheck".....they of course noticed my inability to walk without help, and she decided to do xrays of my back....and found....

that I have Disc Degeneration Disease.....there was 5 bulging discs....and also said I have "spondlyosis".....not sure what that even is......but I had the DDD and bulging discs both in my low back, as well as my neck.....She had me try yet more anti inflamatories.....as well as start seeing a chiropractor.....

Still no luck with any medications......not that I can really put forth a true great effort in taking them.....simply due to how they make me feel....

Chiropractor had me start doing some stretches, walking, swimming etc....all of those things seem to help....it seems to me...that when I warm my muscles up....they feel so much better.....The actual chiropractor care/work....I hate to say it...but I honestly feel that it made my neck/shoulders worse then what it was before I went to him....However, in my low back...I think it actually helped...EXCEPT....that I now have constant pain in my low back..its' just not as intense...and it's kept me from not be able to walk...it doesn't seem to get to that point any more.....

The pain in my low back almost seems to radiate up my spine...not sure if I'm using all the correct terms here..but the pain starts in my low back, and goes straight up the middle of my back, it feels bruised....not to the touch always, but when moving...it feels about like it would feel if you were to touch a bruise on another part of your body.....

I went back to work in August.....still fatigued, still sore all over, more so in my neck and back....right hip and right leg pain are quite a bit better.....and it hasn't gotten to the point of not being able to walk again.....but after I had been back to work for about a month, I was just completely wiped out again. Tired to the point of just couldn't keep moving any more. My back seemed to be getting worse, shoulders are/were almost unbearable, pain going down now into my right arm and hand, numbing, tingling, feeling cold. A new symptom that had come up was shaking....I get shakey in my hands, and legs, sometimes when startled, or while sleeping I will wake up and can literally feel my insides shaking, or vibrating....

My doctor sent me to a rhumatologist....he felt it was fybromyalgia....a little arthritis...Both my regular doctor, as well as the Rhumatologist felt the shaking/vibrating was from Adrenaline rushes.....She also sent me to a neurologist....due to the shaking....he is looking into some of the tests that I had done....and I meet with him again on Monday.....he's also having a new EMG done for nerve damage.....

My questions are......Adrenaline rushes? why? from what? Has anyone else ever heard of such a rash of symptoms? and have you ever heard of a diagnosis? I still have the breathing problem...although I don't notice it without heavy exercise....running up stairs, etc....and then I really notice it.....light headed, dizzy, hard to catch my breath etc. The back pain? how can my whole spine hurt, without them seeing any wrong on xrays and mri? Is this all in my head?

I am out of time to be off work....I have a sit down job, where I am at a computer for 8-10 hours of the day....I have an hour drive to/from work.....I am scared to death that I am going to go back to the doctor on monday and they will still have no answers for me...and that I will be living like this forever! The last leave papers my doctor filled out for my work said that it was "stress" related...so my short term disability is only covering my leave up to 20 hours A MONTH.....because they don't cover stress/emotional issues under their "short term disability" coverage.......I'm not ever sure where my doctor came up with the "stress" conclusion in the first place! I don't have any more stress in my life, than any other individual, except the HEALTH SITUATION!

If anyone has suggestions on what I shoudl be doing differently...or things I can ask the doctors...I would so greatly appreciate hearing from you!

Thank you for your time! Nakoma

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