Discussions By Condition: I cannot get a diagnosis.

Undiagnosed overall body swelling

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: nickiab
  • August 14, 2009
  • 08:36 PM

57 yr old female, had fibromyalgia many years,tonsils out twice, gallbladder out (no stones found) osteoarthritis all over inckuding skull, 3 degenerated discs, 5 broken ribs 4 of which I didn't know about until scan, hips recently causing walking-sitting- laying probs, migraines since childhood, sporadic blurry vision and waves of dizziness.
Have sufferred 4-5 years of overall body swelling, worsened by activity, and particularly the longer I am up and mobile,eg walking around the shopping centre for a couple of hours or trying to do menial housework, the more swollen and 'tight' my body feels (believe how ribs broke....unable to wear bra or shoes).
Been told NOT lymphodoema because that only affects extremities.
If one can imagine crossing legs, it feels like bending a hose so the water can't get through.
Had Pinks Disease as an infant and scan shows contact with TB at that time.
I have always been extremely active and busy, doing all around the house and garden, now I can do nothing without causing myself great stress.
Please help.

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  • 57 yr old female, had fibromyalgia many years,tonsils out twice, gallbladder out (no stones found) osteoarthritis all over inckuding skull, 3 degenerated discs, 5 broken ribs 4 of which I didn't know about until scan, hips recently causing walking-sitting- laying probs, migraines since childhood, sporadic blurry vision and waves of dizziness.Have sufferred 4-5 years of overall body swelling, worsened by activity, and particularly the longer I am up and mobile,eg walking around the shopping centre for a couple of hours or trying to do menial housework, the more swollen and 'tight' my body feels (believe how ribs broke....unable to wear bra or shoes).Been told NOT lymphodoema because that only affects extremities.If one can imagine crossing legs, it feels like bending a hose so the water can't get through.Had Pinks Disease as an infant and scan shows contact with TB at that time.I have always been extremely active and busy, doing all around the house and garden, now I can do nothing without causing myself great stress.Please help. Hi:I also have fibromyalgia for about 17 years. They will tell you it doesn't get worse but it can. Mine has. I also have bad discs in back and neck pressing on my spine. alot of swelling. other problems as well. Do you have any problems with your breathing or chest pains, heart rate problems. Alot of my swelling is caused by pulmonary hypertension, diagnosed through a stress test and an echo. if you have any of these other symptoms I sugest you get checked out. ph has symptoms that most of the time are diagnosed as another problem until it is well advanced. the earlier you get a diagnosis the better. Another thing, alot of cardio, and pulmonary doctors aren't up on the subject. The ph assoc. sugest if diagnosed to see a specialist. Which I haven't been able to do, lack of insurance. Good luck.
    regenia 5 Replies
    • November 7, 2009
    • 03:20 PM
    • 0
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  • Hi:I also have fibromyalgia for about 17 years. They will tell you it doesn't get worse but it can. Mine has. I also have bad discs in back and neck pressing on my spine. alot of swelling. other problems as well. Do you have any problems with your breathing or chest pains, heart rate problems. Alot of my swelling is caused by pulmonary hypertension, diagnosed through a stress test and an echo. if you have any of these other symptoms I sugest you get checked out. ph has symptoms that most of the time are diagnosed as another problem until it is well advanced. the earlier you get a diagnosis the better. Another thing, alot of cardio, and pulmonary doctors aren't up on the subject. The ph assoc. sugest if diagnosed to see a specialist. Which I haven't been able to do, lack of insurance. Good luck.:p Thank you very much for your response and helpful additional info....breathing probs, chest pains, etc.I have also suffered "lack of interest syndrome" and "she's attention seeking" from the medical profession, and my family for that matter, which does nothing for ones' self esteem. I know I force myself to do jobs around the house and garden, and suffer greatly for doing so.I'm sorry you haven't seen an hp specialist yet...are they very expensive for you to pay for yourself, or must you have insurance?I am a disability pensioner, so if I can get my GP to refer me, I would have to pay also......would be worth it to enjoy life again.Good luck to.Nicki :o
    nickiab 3 Replies
    • November 9, 2009
    • 07:23 AM
    • 0
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