So I want to run down a list of symptoms and doctors feedback and get some opinions on whether I should be concerned or doing anything more. It might be a little bit of a TL/DR post but Ill try keep it short.
Over the past 24 to 30 months I have experienced a wide range of symptoms that may or not be related and received a number of different messages from doctors. Here goes.
1. The very first incident probably three years ago was very painful elbow areas every night for the period of about a week. During the day everything fine. Both elbows. At night I literally tried every prop and position to find relief and nothing. Didnt sleep particularly well. Im not one to rush off to the doc and just when I was about to reach my limit it disappeared.
2. Not long after I noticed extreme swelling in my left leg every day. At around the same time I started waking up with sore heels and stiff ankles. It was mildly painful to walk especially during the night but after 15 minutes in the morning all was good. The swelling is significant and continues to this day (over 18 months so far).
3. This was when I first engaged a doctor. After being scanned three times for DVT, having anti inflammotories presribed, having water tablets prescribed and numerous blood tests my doctor finally decided a slightly elevated uric acid was the cause and put me on Puricos. I wasnt convinved since I would have expected Gout to be more painful but none the less.
4. All the pills above did nothing for the swelling.
5. Went to a second GP for a second opinion. After much of the same process he finally ordered (as part of a bigger bundle) an ANA test which came back as 1:1280 speckled and he immediately shipped me off to a Rheumatologist. I should mention at this point that I dont think this was my first ever ANA test. A good 10 years ago I was having some unrelated health issues and a doctor while perusing my blood results asked me if I had a family history of autoimmune diseas. She went on to say that one of the results was high but given I was a young otherwise healthy male she was going to ignore it.I never asked what it was but having read up a little now I can only assume it might have bee an ANA although why she would have ordered one is beyond me.
6. So heel pain disappears and by the time I see the Rheumatologist only symptom left is the swelling. He is the first doctor to point out that although the left leg is massively swollen, the right leg is also swollen. Not so noticeable because always comparing the two but there is a lot of fluid in both legs. He is convinced no underlying arthritis is the cause because I ahve no pain at the time and the previous pain was mild. After having another gazilion tests (at least I know my heart, kidneys, liver, etc are all functioning well!
)he settles on lymphedema as the root diagnosis and tells me to get some pressure stockings. They help a little - but my legs still swell. That said - the swelling seems to match everything I have read about Lymphedema so I think he has that right (although I have no idea what could have triggered it).
7. Since then... heel pain comes and goes (its mild to moderate - never really very painful) - but I have also had two or three bouts of Gout or Gout like pain since. That pain as you all no doubt know is terrible - been happening in the left toe only. Corticosteroid jab does the trick on those every time.
8. I've also had two incidents of my left foot becoming really painful to walk on - but not painful to touch or when sitting. Pain was along the left side and top of the foot. Felt like someone was jabbing a knife through there every time I put pressure on it. Both lasted about 3 or 4 days and GP and physio suggested this is tendonitis and likely a side effect of the lymphedema.
9. One last thing I should mention is that in the last two years I have gone from needing 5 or 6 hours of sleep a night to really needing 9 or 10 hours and still feeling tired all the time. Although everyone laughs at me and says I am getting old (maybe I am - 38btw) this for me is the single most frustrating thing. And it really might just be my body telling me to slow down but I thought I'd mention it anyway.
So - where we are right now I wear the stockings for Lymphedema and treat other pain as it comes along. Its really frustrating as when all this started I made a decision to get back into exercise and triathlons but the recurrent and various issues with the left leg really impact my ability to exercise. Its interesting that although the Lymphedema (swelling and heel pain is in both legs) the other pain symptoms have been confined to the left foot.
My real question though is would anyone here be more concerned with the ANA tests. None of my doctors have wanted to repeat the test. They all say its worthless and my symptoms dont indicate anything that would be consistent with the result.
I dont know enough to know whether any treatment would be any different if a doctor did feel that I had RA or anything similair. If they would still just treat the symptoms at this stage then I guess it doesnt matter but if they would do anything differently then I'd consider getting a second opinon from another Rheumatologist.
Im not exactly in panic mode or anything but I am frustrated as all hell. All the little things dont sound like much but all put together it adds up to one hell of a pain in the backside.
(P.S - One other thing I didnt mention is I have Cubital tunnel syndrome in my right arm. Flares from time to time. When at its worst I walk around with numb fingers and pain from my shoulder through to my wrist. I dont really know that its particularly related to everything else in my legs as I think the root cause of this was simply over use. I had a mouse intensive job for a while. Although I no longer use my mouse much and most days my arm is pretty much normal it flares up every 3 to 6 months for no apparent reason - just being more conscious of resting it seems to settle it down.)