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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10 Replies:

  • I'm not sure about vibrating, definitely let us know what the doctor says when you go. Where do you live? Which is a bigger problem, the pain, or the trouble moving around?
    qwertyuiop123 453 Replies
    • October 4, 2008
    • 10:29 PM
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  • I live in Southern Minnesota. Pain would be the bigger problem...and it's not like a stabbing or unable to bear it type pain...it's just an achy, stiff and sore muscle and joint type pain. But it's been going on for so long, and affects my sleep, that it's like a never ending vicious cycle. The hip and leg pain, that gets to the point of not being able to walk, they were able to give me an explanation that does make sense...they feel that one of the bulging discs in my low back actually becomes a herniated disc, and that's when I have the horrible pain in my right hip and leg, and then I can hardly walk, or can't walk at times without hanging on to something or having help. They seem to think the chiropractor made that better......and I'm not sure....because I don't do all the normal activities that I used to be able to do, which would cause that to flare up. My appointment on Monday is in Rochester, and I will definantly pass on what I find out from them.
    nakoma 2 Replies
    • October 4, 2008
    • 10:41 PM
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  • It sounds as if everything can be attributed to the Ankylosing Spondylitis. It's a connective tissue disease that causes inflammation of the spine and larger joints, which cause stiffness and pain. This comes in periods of flareups, with times of mild or no symptoms alternating with times of moderate to severe. Not every flair up is like the one before it. Once it can be managable, and the next could be dibilitating. The pain is generally worse at night, with intense stiffness in the morning. Asprin and Nsaids can be used to help ease mild to moderate pain, but just won't help with severe pain. Prescribed muscle relaxants and narcotic analgesics can be used only during severe flareups. Any more use beyond this could result in an immunity and dependancy to them. In more severe cases, surgery may be needed to replace a joint that has been irreversibly damaged, usually a hip or knee. Keeping a good posture can also help alleviate symtoms. Sitting tall and straight up helps relieve compression of the tissues. Talk to your doctor about wearing a back brace to help with this, since it's a natural reflex to want to bend over to alleviate lower back pain. In the end, bending over is only making it worse. I truly hope this helps, and will get you back on a happy, pain free road.
    LadyLeprechan 24 Replies
    • October 5, 2008
    • 00:59 AM
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  • Thank you so much for the response and information! I just did a little research on the Ankylosing Spondylitis, and now my question is: when they checked my sed rate, they say that it is within normal limits.....where it was elevated when this all started....so would the anti-inflamatories bring that sed rate down? to normal limits? And could it still be this condition, even tho the sed rate is within normal limits? I go back to the doctor tomorrow, and just really need to be as informed as I possibly can be. I really hate to go back at all, because I just feel they think it's all in my head. Although I'm sure my state of mind doesn't help the matter most of the time, I just feel like we're missing something. I just don't believe that someone can feel this bad, so much of the time, and have no reason for it. The problem with my low back, right hip and leg, I've had since I was in junior high.....horrible at times, but most often it would get better....I'm 40 now(ssshhhhh)...and over this past year, it has never went away, not even for a day. Worse at times, yes, but it never completely goes away. I just find that odd. The other thing I wonder about, is what type of doctor would handle this type of condition? I have been seening a family doctor since last December, I've seen a Rheumatologist once, and now this will be my second visit to Rochester to see the same Neurologist....is there such a doctor as a spine specialist? and would it be beneficial to see this type of doctor? Thank you so much for taking the time to answer to my post, it is so greatly appreciated! Nakoma
    nakoma 2 Replies
    • October 5, 2008
    • 02:55 PM
    • 0
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  • You have several things going on. Many back problems for one. The walking and hip pain can be from sacroliliac dysfunction/ inflamtion. This trianglular joint ties the hips together.And causes hip, pelvic and leg pain. Check out www.spineuniverse.com for lots of spinal problems and relief. I will suggest you see a good Ortho specialist/surgeon { they can test for more things, not saying you need surgery} and find a "sports medicine pain dr"/ clinic. They deal with athlete's injuries, that some drs never see.They can do procedures now without surgeries and stop all the pain. try not to let some of the info scare you. It may sound awful, but it works. { gp's told me for yrs I had pulled muscles in my back, when I had bulging and blown disks.}Secondly, Have all infections and viruses been tested for and ruled out ? did you get tests done on the lungs, for things like chlymadya{ sp?} pheumonia, sarciodiosis, mycroplasmas, etc. Been tested for Lyme and co infections, they can cause many of the symptoms. www.lymenet.org is a great place for help & info.Good luck, hope you can feel better soon~~JerseyLymie
    Anonymous 42789 Replies
    • October 6, 2008
    • 00:20 PM
    • 0
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  • You might want to see a GOOD Chiropractor (spine specialist). Not all Chiros are that great at all, so do your research!! Get your spine realigned (it might take several visits). This may help with your lower back, hip, and leg pain. A straight spine works WONDERS!!! Even if only 1 vertabrate is out of line, be it just the right one can cause pain down the right side. Yes, the anti inflammatories bring down the sed rate. The Sedimentation Rate is to test and monitor inflammation in the body. Taking the anti inflammatories will lessen inflammation therefore lowering the sed rate to normal range (for females is 0-20 millimeters/hr). It could still be this condition despite normal sed rates due to the nsaids. Talk with your dr. first before stopping the nsaids, and get retested after they've left the body. I hope all's well with your next appt!! Thank you so much for the response and information! I just did a little research on the Ankylosing Spondylitis, and now my question is: when they checked my sed rate, they say that it is within normal limits.....where it was elevated when this all started....so would the anti-inflamatories bring that sed rate down? to normal limits? And could it still be this condition, even tho the sed rate is within normal limits? I go back to the doctor tomorrow, and just really need to be as informed as I possibly can be. I really hate to go back at all, because I just feel they think it's all in my head. Although I'm sure my state of mind doesn't help the matter most of the time, I just feel like we're missing something. I just don't believe that someone can feel this bad, so much of the time, and have no reason for it. The problem with my low back, right hip and leg, I've had since I was in junior high.....horrible at times, but most often it would get better....I'm 40 now(ssshhhhh)...and over this past year, it has never went away, not even for a day. Worse at times, yes, but it never completely goes away. I just find that odd. The other thing I wonder about, is what type of doctor would handle this type of condition? I have been seening a family doctor since last December, I've seen a Rheumatologist once, and now this will be my second visit to Rochester to see the same Neurologist....is there such a doctor as a spine specialist? and would it be beneficial to see this type of doctor? Thank you so much for taking the time to answer to my post, it is so greatly appreciated! Nakoma
    LadyLeprechan 24 Replies
    • October 7, 2008
    • 04:32 PM
    • 0
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  • I had very similar symptoms when I first became very ill. I did have a bulging disc. I was sent to a chiro which made things worse. I had physical therapy for 6 months which did nothing or made things worse. I had tried different theapists when I became worse, but over many months, nothing worked. I had had tons of testing most thing came back negative. I had more than one thing hurting me in my back, I think the bulging disc got better, but I was still in terrible pain. I t took many years of that pain and tons of testing, I ended up with Lyme and Babesiosis. Babesia can cause breathing problems (I would get out of breath from just talking) even though I was in decent shape. I had been a runner, but that had to stop once I got so ill. A routine lab run test will probably not show if you have Lyme and Babesia. If you can get a hold of Igenex Lab they will send your doctors a lab testing kit so you can send off samples to them. If you get no answers, I would go that way as soon as possible considering you are in such bad shape. Depending on your insurance, you may have to pay for the tests and then have your insurance pay their portion. But that bit of money will be well worth it if you get answers. I have viral loads (like mono... etc) which all are up because I have an on going couple of infections. I was diagnosed with many things (wrongly) including Fibromyalgia over the years. Lyme can certainly cause arthritis symptoms and terrible back pain -even though you have disc problems which could be part of the reason you are having trouble getting a diagnosis. I do take anti-inflamatory meds which can help a tiny bit, but don't fix anything. But getting the proper medications will help with your sleeping, etc. Not sleeping is another very typical issue with Lyme patients. I hope you check into Lyme before you go back to your doctor's appointment. They can actually send blood off to Igenex. They may well tell you it isn't necessary, but then you are the one going home with no answers and no treatment. Many docs fight the Igenex idea as well as poo poo the idea of going to a LLMD (Lyme Literate Medical Doctor). If you don't get answers... check it out.
    Anonymous 42789 Replies
    • October 7, 2008
    • 09:27 PM
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  • PS Minneosota is a huge area for Lyme Disease... here is a partial list of symptoms. By the time I was diagnosed, I couldn't walk and couldn't make sense of common daily things... Persistent swollen glandsSore throatFeversSore soles, esp. in the AMJoint pain Fingers, toes Ankles, wrists Knees, elbows, Hips, shouldersJoint swelling Fingers, toes, Ankles, wristsJoint swelling Fingers, toes, Ankles, wrists, Knees, elbows, Hips, shouldersUnexplained back painStiffness of the joints or backMuscle pain or crampsObvious muscle weaknessTwitching of the face or othermusclesConfusion, difficulty thinkingDifficulty with concentration,reading, problem absorbingnew informationWord search, name blockForgetfulness, poor shortterm memory, poor attentionDisorientation: getting lost,going to wrong placesSpeech errors- wrong word,misspeakingMood swings, irritability,depressionAnxiety, panic attacksPsychosis (hallucinations,delusions, paranoia, bipolar)TremorSeizuresHeadacheLight sensitivitySound sensitivityVision: double, blurry,floatersEar pain
    Anonymous 42789 Replies
    • October 7, 2008
    • 09:44 PM
    • 0
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  • Adrenaline is a hormone produced by the adrenal gland. We have two of them that are attached to the top of each kidney. When it is produced in the body it stimulates the heart-rate, dilates blood vessels and air passages, and has a number of more minor effects. Adrenaline is naturally produced in high-stress situations. The term "fight or flight" is often used to describe the circumstances under which adrenaline is released into the body. With dilated blood vessels and air passages, the body is able to pass more blood to the muscles and get more air into the lungs quicker, increasing physical performance for short bursts of time. Norepinephrine also called noradrenaline is also released from the adrenal glands when they are active. In a healthily functioning human, about 80% of the released substance is adrenaline, and the other 20% is norepinephrine. Too much adrenaline can cause anxiety, or the jittery feeling you exlpain. It is also quite typical for the BP to drop when standing causing dizzyness. Here is a symptoms list:PalnessFearDizzinessTremorPalpitationPersperationTachycardiaAnxietyHeadacheFeverHypertensionNauseaMore seldom and serious symptoms:SeizuresWeighlossMuscle weaknessCardiomyopathyOver excietmentand even death... There is alot more to tell, but I think you would be better off doing a search yourself.
    Anonymous 42789 Replies
    • October 7, 2008
    • 10:35 PM
    • 0
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  • In my case, I have adrenal exhaustion because Lyme has worn out my adrienal functions.I always figure... something causes such symptoms. Stress is often blamed, but what causes us such stress? We all have tremendous stress, some of course, devastating stress. But don't we kind of get it when stress IS the cause? A question... stress is part of the human experience. Our bodies are designed to deal with it. But sometimes our bodies overdo it or over react. Is it because of an illness that stresses us over the "normal" amount of stress? or is it just that we can't deal with stress?The answers will vary... but BOTH are reasons to research and think about.So it is which came first --the disease or the stress? if indeed there is disease...
    Anonymous 42789 Replies
    • October 7, 2008
    • 10:48 PM
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