Help! Leg pain more than three months...no progress!

[karry]

Hi all,
I am totally lost.
-Mid December last year: started having this pain in my left leg, just above the ankle. Pain increased if I stood or sat for long periods.
-Mid January as pain did not go away I went to ER. Dr examined and said he did not think it was a clot as I had no visible swelling, the area was not warm to the touch  and an xray was done: nothing to report. I was prescribed naproxene 500mg 2x daily
-End of January no improvement, another visit to my HIV specialist: he prescribes a topical cream. No improvement
-Mid February : another visit to ER. A Doppler is done: nothing to report
-End of February: pain in now unbearable: I wake up in the middle of the night from pain and can't step on my leg if I am not on pain medication
-Early march another visit to my hiv specialist who sends me to a podiatrist---the podiatrist can't figure out what is wrong with me.

Here I am, still in pain...and every night I am scared of sleeping cause I will wake up in that awful pain. My next visit is this Friday.

Has anyone ever gone through this? The pain is hard to describe: feels like it hurts from the bone, but at same time the skin around is very sensitive to the touch. At times, the pain radiates to my foot and toes.

I am lost.
Please help.
K.

[Wade]

That sounds horrible,
What meds are you on ?
Wade

[Joe K]

Karry,

I'm so sorry to hear you are having such pain.  Based on what you report, I think it must involve your nerves, as the movement and change in sensation is hard to explain any other way.  For a couple of years I had a weakening in my left leg.  No pain, but the leg became weak and would tingle.  I used a cane for 2 years, simply because I could not trust my left leg not to collapse.

It was all traced to nerve issues, which we never fully understood, and it went away after 2 years or so.  From what you describe, it seems it has to be some type of nerve issue, or possibly neurological.

I suggest you put real pressure on your primary doc to get you to see a number of specialists.  Constant intense pain is never any way to live.  I've done it and it can made you insane.  I think you need to be very forceful in getting some answers.  I know how challenging our health system can be, but a test every couple of weeks, isn't going to give any answers anytime soon.

Joe

[BT65]

Hey Karry,
I have to agree with Joe.  I would ask for a referral first to a neurologist and see if (s)he can help.  I would also ask for a referral, if you haven't done so, to a pain specialist.  I have leg pain, but mine is mostly in my knees, and it has to do with a certain condition. 

If you get no solid answers from the neurologist I would ask for a referral to a rheumatologist.  Really, good luck with this.  Please keep us informed.

Betty

[karry]

Thanks for the quick input and the advice. I will certainly ask for referral to a neurologist when I meet my primary doc this Friday. The pain is driving me insane. I walk with a limp already.

Will keep you posted.
xoxo
K

[Miss Philicia]

I agree with seeing a neurologist as well. But the over-arching issue here is that you have to be VERY INSISTENT AND PERSISTENT with your GP/HIV doctor about this issue.

I have been dealing with podiatry and nerve issues now for five years and I still am not sure if I have a complete diagnosis. I know that won't sound very encouraging, but sometimes that's just how these things play out. You can go to three different neurologists and they will all tell you something different -- it's rather exasperating.

[zach]

yep, neuro is your first stop. expect a variety of touch response tests, maybe mri, maybe lumbar puncture. good luck. keep moving

[karry]

Thanks everyone.
In a "selfish" way its kind of comforting knowing others have been through a similar experience, although I don't wish this pain and discomfort on anyone! But I feel some comfort knowing I am not insane...I was almost getting to that point. Now I know what to expect, I will pack my fighting and insisting lines for my visit on Friday.
Thanks a lot for your input.
K.

[zach]

i feel better knowing you're suffering too 

[Joe K]

Karry,

Your experience should drive your search on health issues.  You know your body the best and when something does not feel right, it is time to act.  That's why "knowing" your body is so important.  It allows you to ignore the normal aches and pains of simply living and realize when something needs direct intervention.  It also provides you the confidence in your own judgement, to know you are not crazy and that your concerns are legitimate.

Joe

[bino88]

just tagging along here ...are u diabetic ? because the pain u described sounds neuropathic which could be taken care of with some meds like pregabalin, gabapentin, e.t.c pretty common in diabetes... hope everything goes well and u feel better.

[Miss Philicia]

just tagging along here ...are u diabetic ? because the pain u described sounds neuropathic which could be taken care of with some meds like pregabalin, gabapentin, e.t.c pretty common in diabetes... hope everything goes well and u feel better.

You can have neuropathy and not be diabetic. It's not unusual when you have HIV. And for others reading this you can get it just from the HIV infection itself, it need not be from HIV medications. The most common is called HIV-associated distal sensorimotor polyneuropathy, but there can be others like small nerve neuropathy, etc.

But yes, if you have HIV and are diagnosed with neuropathy the first thing that should be done is testing for diabetes. But that's just one of them -- I think they ran about ten different blood tests on me last year and every single one of them I passed (as in they were not contributing factors).

But before freaking Karry out this could also be something like a nerve entrapment or a variety of other issues not even associated with HIV.

[karry]

Updates: So I took all the good advice I got from you and met with my HIV specialist today.

He does not think I need and MRI, despite my insisting and persisting, does not think I need to see a neurologist.

So instead in a bit over a week from now I am meeting a rheumatologist.

Blood tests were done this morning and amongst others they will be checking for diabetes and my Vit D (I had part f my thyroid removed in 2010).

 For now I am stock on acetaminophen (Tylenol -if it can help the pain ) or oxycodone (30 days prescription) if the Tylenol does not work. I was very adamant about my fears of the oxycodone. So I do hope the acetaminophen helps me.

In two weeks from now I am meeting my HIV dr again.

K.

[karry]

Hi all,
Just some updates on my leg pain issue:
turns out from xray I had two micro fractures on my left tibia...hence the source of pain. The rheumatologist actually pointed them to me. Amazing it took a fourth doctor to see what has been bothering me since December. The other three looked at same xray and saw nothing. The guy I saw today obviously has a lot of experience...and yes, there is callus formation actually on the area I called the epicentre of the pain from hell.

While I feel relieved that they found this, I still have to wait to do a second exam. I still don't know what caused this fracture. Cant recall any incident that might have led to this.

still on pain meds and now been told not to put pressure on the leg.

the tests for diabetes came back ok as well.

K.

[BT65]

Oh that makes sense.  Last year my tibia snapped and fractured in half, I couldn't walk.

I don't know when you tested positive, but my bones keep breaking from having osteoporosis caused by having HIV for so long, plus the meds.  I mean, my bones broke just because I was walking.  You may do well to ask your doctor for a Dexa scan to see if you may have osteoporosis.  Just a thought.

Betty