Discussions By Condition: I cannot get a diagnosis.

finger swelling, raynaud phenomenon, now trouble breathing

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: Anonymous
  • May 19, 2009
  • 03:37 PM

ok.... so. ive diagnosed myself as having raynaud's phenomenon which started this past winter. thats just one new thing.
i have very thin fingers; im 5'6", 108lbs 26 year old woman, and no im not anorexic, i actually eat like a pig.
around october, i think, my right index finger lower joint felt stiff. then swelled. i thought maybe it was sprained. nothing helped the swelling it just got worse. then the whole finger swelled. i fianlly went to urgent care about 3 weeks after the initial symptom. the doctor actually looked very concerned which scared me. he said it was either an infection or gout. i had no abrasions, no splinters, and there was NO PAIN, which no one could believe. i couldn't bend my finger at all. nothing helped, ice, anti-biotics, sea salt soaks, elevation, nothing. 4 days later it did not improve, i went to the ER and the doctor dismissed it as herpetic whitlow (which it was not) and prescribed me 7.5 vicodin even though i told him several times there was no pain. he assumed herpetic whitlow because of some odd bumps on my knuckle, which actually were from old scars, the skin was so swollen that the scars on my hand ballooned out a little further. i have no health insurance because i was laid off in october and COBRA is way too expensive, so needless to say i was very upset that no one knew what was wrong with me and i had lots of bills i couldn't pay.

anyway, the swelling moved into my base knuckle and then moved slowly to my other fingers. it was even swelling like someone stuck a tube into my fingers and filled them with water right before the skin would burst. it went from my middle finger then to my ring finger. oh! i almost forget when all this began my finger nails stopped growing on the fingers that were affected. my index finger started to finally go down and the others followed in the order of which they started. i had stretch marks and eventually the top layer of skin peeled right off in large pieces like the dead skin you get from a sun burn. my fingers still looked odd, the knuckles looked larger, wider, and were hard, it wasn't fluid. so that all lasted for about 2 or 3 months.
oh! sometimes the skin was hot to the touch and it itched LIKE CRAZY, but it was not an infection.

around march my right ring finger swelled. at this point i wanted to cry. because when my hand was swollen i was pretty much useless (if you're right handed try brushing your teeth with your left, it's quite irritating.) this episode was shorter than the last and didn't get as bad. but this time the nail on my right middle finger actually RECEDED! ugh. what a nightmare. and the cuticle part of my right index finger receded, but not the nail, so more of my nail was showing, if that all makes sense. anyway the swelling went down about a month later and now finally my middle finger nail is almost at it's normal length again. i keep my nails very short.

and on top of all that i have developed some kind of breathing problem. it started a couple months ago. its as if i can't get enough air. like i can't get the perfect breath. and i yawn a lot but can never finish them. this has been on and off.


so... that's that. im afraid to spend more money seeing a doctor just to tell me the same stuff ive already heard. i did as much research as i could online. but nothing seems to fit. especially since the swelling is not accompanied by pain.

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10 Replies:

  • What you describe can be a symptom of a rare disease called hereditary angioedema (HAE). You need to get checked for this ASAP! Swelling in your throat can be life-threatening. Other blood tests should be done, namely checking your levels of proteins called C1 and C4. This is something doctors miss doing all the time. But be aware that there is a type of HAE (Type III) that no blood test can detect--it gets diagnosed purely on your symptoms. It's also often linked to autoimmune problems, like Raynaud's and arthritis. Try here: www.haea.org
    aquila 1263 Replies Flag this Response
  • thank you for the info!!"The only thing that does not fit is that you have not mentioned any body pains anywhere else (low back, knees, hips, wrists/hands) which usually goes with rheumatology issues but the tests (above) would still be a good place to start."actually i have chronic back pain, somewhat chronic knee pain, and occasional hip pain. my wrists dont hurt very often. i didn't really think anything of it. my back is really bad, i can't sit in a regular dining chair too long without terrible pain, or even a booth at a restaurant. im so used to being in pain i dont really think about it. also my joints pop and click quite often and usually pretty loudly, even my back just from shifting positions
    Anonymous 42789 Replies Flag this Response
  • oh i almost forgot!! i have had a blood test for my vit D levels and they were very low, i had to take Rx vitD, but when i was supposed to go back and get tested again is around when i lost my job, so i never had it tested again.
    Anonymous 42789 Replies Flag this Response
  • (im the original poster)i think i probably should have mentioned i have un diagnosed mild heart problems too. my heart skips sometimes. it also is very rapid at times, or sometimes regular speed but very strong. i had a physical test for a job, after about 2 minutes of the step test my HR was 160 i think. and during the lift test it shot up to 188.also im always tired. if i could get away with laying in bed sleeping all day i would.
    red83black 2 Replies Flag this Response
  • Hi, I agree with the prior advice to see a doctor, although you may want to wait until you have insurance so that treatment is not precluded based on a preexisting condition exception. In addition to the other conditions mentioned, look up Scleroderma. It has many of the symptoms you have described and often presents with Raynaud's (about 90% of people with Scleroderma have Raynaud's, but only a small percentage of people with Raynaud's develop Scleroderma). In addition to the finger/hand swelling and difficultly bending, it can affect your heart and lungs, in the systemic form (Systemic Sclerosis), which could explain your other symptoms. Although there is no treatment for Scleroderma itself (which is an autimmune condition), there is treatment for secondary conditions affecting the organs (heart, lungs) and for Raynaud's. If there is any way you could still elect COBRA if you think it will take some time to obtain new coverage through an employer, I would recommend you do so. Maybe family/friends could help you. Based on what I have come to learn about the possible conditions you might be looking at, they are chronic and staying on top of it will be important. I don't mean to worry you, but don't want you to pass it off. Scleroderma is a Connective Tissue Disorder, so you may want to google that, as well as Scleroderma, to see if anything sounds like what you are experiencing. Best wishes -
    notadr 1 Replies Flag this Response
  • thank you very much for your input! scleroderma unfortunately sounds like it may be what's wrong. it includes a couple other things i hadn't thought to mention, like my chronic heart burn and digestive issues, i have diarrhea quite often, and sometimes just 10 minutes after a meal.it's quite frustrating having so many little annoyances, in a way i really wish it is scleroderma. at least id have an answer. im afraid a doctor will just think im a hypochondriac, or not listen at all (like the ER doctor when i went for my swollen finger) it's also hard to actually remember all my issues because im so used to most of them by now.a new one now is that im sweating a lot more than i ever have. and ive never had body odor but now the sweat from my right arm pit is very strong, even right after a shower. it's seems like one thing after another. while typing this my back is on fire, im sick of being in pain :(i should stop with the self-pity. it could always be worse.
    red83black 2 Replies Flag this Response
  • ok.... so. ive diagnosed myself as having raynaud's phenomenon which started this past winter. thats just one new thing.i have very thin fingers; im 5'6", 108lbs 26 year old woman, and no im not anorexic, i actually eat like a pig.around october, i think, my right index finger lower joint felt stiff. then swelled. i thought maybe it was sprained. nothing helped the swelling it just got worse. then the whole finger swelled. i fianlly went to urgent care about 3 weeks after the initial symptom. the doctor actually looked very concerned which scared me. he said it was either an infection or gout. i had no abrasions, no splinters, and there was NO PAIN, which no one could believe. i couldn't bend my finger at all. nothing helped, ice, anti-biotics, sea salt soaks, elevation, nothing. 4 days later it did not improve, i went to the ER and the doctor dismissed it as herpetic whitlow (which it was not) and prescribed me 7.5 vicodin even though i told him several times there was no pain. he assumed herpetic whitlow because of some odd bumps on my knuckle, which actually were from old scars, the skin was so swollen that the scars on my hand ballooned out a little further. i have no health insurance because i was laid off in october and COBRA is way too expensive, so needless to say i was very upset that no one knew what was wrong with me and i had lots of bills i couldn't pay.anyway, the swelling moved into my base knuckle and then moved slowly to my other fingers. it was even swelling like someone stuck a tube into my fingers and filled them with water right before the skin would burst. it went from my middle finger then to my ring finger. oh! i almost forget when all this began my finger nails stopped growing on the fingers that were affected. my index finger started to finally go down and the others followed in the order of which they started. i had stretch marks and eventually the top layer of skin peeled right off in large pieces like the dead skin you get from a sun burn. my fingers still looked odd, the knuckles looked larger, wider, and were hard, it wasn't fluid. so that all lasted for about 2 or 3 months.oh! sometimes the skin was hot to the touch and it itched LIKE CRAZY, but it was not an infection.around march my right ring finger swelled. at this point i wanted to cry. because when my hand was swollen i was pretty much useless (if you're right handed try brushing your teeth with your left, it's quite irritating.) this episode was shorter than the last and didn't get as bad. but this time the nail on my right middle finger actually RECEDED! ugh. what a nightmare. and the cuticle part of my right index finger receded, but not the nail, so more of my nail was showing, if that all makes sense. anyway the swelling went down about a month later and now finally my middle finger nail is almost at it's normal length again. i keep my nails very short.and on top of all that i have developed some kind of breathing problem. it started a couple months ago. its as if i can't get enough air. like i can't get the perfect breath. and i yawn a lot but can never finish them. this has been on and off.so... that's that. im afraid to spend more money seeing a doctor just to tell me the same stuff ive already heard. i did as much research as i could online. but nothing seems to fit. especially since the swelling is not accompanied by pain.you do not have raynards phonomanon. with this condition you would get vry cols all the time even in the summer your hands would swell but not to the piont of what you have said. they would also go white at the end of your fingers and this would course a raydards attack which would last for 20mins. i have had this condition since i was born.so you need to get blood tests done and dont exept what some doctors say try to go into it more so that you can find your ans. i thought this info might help you as i know what the condition contains and how it would affect you and all the symtoms. hope you find out what is going on.
    Anonymous 42789 Replies Flag this Response
  • GET Scleroderma testing with Rheumatologist asap--"limited scleroderma" causes Reynauds phenom, thin skin in hands, swelling in hands. Also linked to lung issues. 10mg prednisone from doc will do worlds more than any NSAIDs. I was on NSAID merry-go-round for months with general practitioner with NO RESULTS for what he said was carpal tunnel. Thankfully, the rheumatologist saw the hand swelling and carpal tunnel were symptoms of the scleroderma type condition in hands and feet only--swelling was down in one week. Prednisone dosage was for ONE MONTH, tapering off for another month. Cost was minimal.Get the test panel for Scleroderma. Prednisone and testing should be covered by your insurance. Get a referral if need be, but see a rheumatologist next week. Make them squeeze you in. try and see a doc near a lab so you can go straight there--none of the testing requires fasting--unless the rheumatologist says otherwise. Verify lab companies you can see with your insurance then map the closest ones. stay away from vicodin pusher docs. Look for positive, solution-oriented docs from now on. The pushers just want to shut you up and move on to the next patient.ok.... so. ive diagnosed myself as having raynaud's phenomenon which started this past winter. thats just one new thing.i have very thin fingers; im 5'6", 108lbs 26 year old woman, and no im not anorexic, i actually eat like a pig.around october, i think, my right index finger lower joint felt stiff. then swelled. i thought maybe it was sprained. nothing helped the swelling it just got worse. then the whole finger swelled. i fianlly went to urgent care about 3 weeks after the initial symptom. the doctor actually looked very concerned which scared me. he said it was either an infection or gout. i had no abrasions, no splinters, and there was NO PAIN, which no one could believe. i couldn't bend my finger at all. nothing helped, ice, anti-biotics, sea salt soaks, elevation, nothing. 4 days later it did not improve, i went to the ER and the doctor dismissed it as herpetic whitlow (which it was not) and prescribed me 7.5 vicodin even though i told him several times there was no pain. he assumed herpetic whitlow because of some odd bumps on my knuckle, which actually were from old scars, the skin was so swollen that the scars on my hand ballooned out a little further. i have no health insurance because i was laid off in october and COBRA is way too expensive, so needless to say i was very upset that no one knew what was wrong with me and i had lots of bills i couldn't pay.anyway, the swelling moved into my base knuckle and then moved slowly to my other fingers. it was even swelling like someone stuck a tube into my fingers and filled them with water right before the skin would burst. it went from my middle finger then to my ring finger. oh! i almost forget when all this began my finger nails stopped growing on the fingers that were affected. my index finger started to finally go down and the others followed in the order of which they started. i had stretch marks and eventually the top layer of skin peeled right off in large pieces like the dead skin you get from a sun burn. my fingers still looked odd, the knuckles looked larger, wider, and were hard, it wasn't fluid. so that all lasted for about 2 or 3 months.oh! sometimes the skin was hot to the touch and it itched LIKE CRAZY, but it was not an infection.around march my right ring finger swelled. at this point i wanted to cry. because when my hand was swollen i was pretty much useless (if you're right handed try brushing your teeth with your left, it's quite irritating.) this episode was shorter than the last and didn't get as bad. but this time the nail on my right middle finger actually RECEDED! ugh. what a nightmare. and the cuticle part of my right index finger receded, but not the nail, so more of my nail was showing, if that all makes sense. anyway the swelling went down about a month later and now finally my middle finger nail is almost at it's normal length again. i keep my nails very short.and on top of all that i have developed some kind of breathing problem. it started a couple months ago. its as if i can't get enough air. like i can't get the perfect breath. and i yawn a lot but can never finish them. this has been on and off.so... that's that. im afraid to spend more money seeing a doctor just to tell me the same stuff ive already heard. i did as much research as i could online. but nothing seems to fit. especially since the swelling is not accompanied by pain.
    Anonymous 42789 Replies Flag this Response
  • (im the original poster)i think i probably should have mentioned i have un diagnosed mild heart problems too. my heart skips sometimes. it also is very rapid at times, or sometimes regular speed but very strong. i had a physical test for a job, after about 2 minutes of the step test my HR was 160 i think. and during the lift test it shot up to 188.also im always tired. if i could get away with laying in bed sleeping all day i would.Did you ever find out what was causing your symptoms? I found this forum after the knuckle of my left index finger suddenly felt like it had been stung, became visibly swollen and then turned black and blue. As I read your posts it was as if I had written them! I am 5 ft 7 around 116 pounds, have had Raynaud's as long as I can remember, coupled with low blood pressure and diagnosed moderate sleep apnea. I am scheduled to see my doctor next week for a full blood workup but in the meantime I would love to know if you ever figured out your problem. Thanks!
    Anonymous 42789 Replies Flag this Response
  • Hope you are cured now. I had the same kind of problem years ago. Fingers would get really swollen, painful and hot. It lasted more than 6 months. I went to many doctors and a hand surgeon. None of the prescribed drugs worked. Finally saw an acupuncturist at the urging of a friend. She cured the problem within a few weeks and it has not recurred for more than 10 years now.Worth checking it out.Helios
    Anonymous 42789 Replies
    • August 30, 2010
    • 01:43 AM
    • 0
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