New (almost) Poster/Question PN and new pain
 

Hi all and Mrs. D--

I used to post on BrainTalk several years ago, but then it went dark and I couldn't find it. Mrs. D, I am Nan. I've talked with you several times.

I have a question. I've been dealing with PN for a number of years, and at first, I was in considerable pain and could barely walk more than ten minutes at a time. After going on Neurontin (now Gabapentin), and only taking twice a day, I've had it under some control, and I was able to do most anything unless it affected my back (bad back issues).

However, several months ago, I was lying in bed almost asleep when I had an excruciating pain in both feet. I couldn't even attempt to sleep. I had to get up and sit in a recliner in order to sleep. I went to my new physician, and he prescribed pentoxifilline (spelling?), which is a blood thinner. I started taking it three times a day, and that pain pretty much disappeared. I'm now only taking it occasionally at night. Now, though, the tingling pain has come back and whereas I could have ignored it before, I can't now. I know that's the PN, but the other--the extreme pain that was only relieved when I sat in a recliner--I wonder if it has something to do with a vascular problem. My cholesterol is quite high, but I've refused to take the statins anymore. I was on them for fifteen or so years. Also, I've lost almost all of the hair on my legs. Is this normal for PN?

Sorry for all the questions. Thanks for any thoughts on this.

Can you explain your pain more? What did it feel like?

It sounds vascular to me, especially since the recliner position change, helps relieve the pain. The tingling and buzzing feeling may be PN, but it could be vascular, as well.
IMO, you should have an evaluation for vasculitis by a vascular surgeon.

Peppermint Patty, the pain was extreme. On a scale of 1 to 10; it was more than a 10. I absolutely couldn't lie in bed. I "had" to get up. Once I got into the recliner, the pain subsided enough to catnap. After seeing the doctor, and getting on the Pentoxifylline (blood thinner) three times a day, it was much better.

Right now, I'm only taking the Pentoxifylline once at night and Gabapentin twice a day. (I don't like taking too many meds.) But my feet are vibrating like crazy. Occasionally, I feel some of the other pain too.

Does that answer your question?

Nide44, thanks for your advice. I'll see if I can get an appointment with a vascular doctor. I can't help wondering if it may be vascular, but I know nothing about vascular issues. That's why I asked if you all knew.

I'm sorry you are having such pain, glad mine has not gotten that bad. I think Peppermint Patty was wanting you to describe more of what the pain was like, for example was it aching, stabbing, electric, dull, sharp, etc. And the exact location, was it on your skin on the bottom your feet, deep inside, etc.

You might consider aspirin as a blood thinner, but I don't know if this is right for you or not. Maybe 1 or 2 low-dose aspirin (81mg) per day. Dr. Andrew Weil recommends everyone taking these every day. I forget the benefits he is going for.
Electron

Yes, that exactly. :)

It's hard to describe, but it was a deep-seated pain, throughout the whole foot (both feet) from the ankles (not including the ankles) down. My feet felt heavy and the pain was unbearable until I got in the recliner. It's been quite awhile now, so I don't recall exactly, but I guess it would be considered severe, sharp, maybe even stabbing, though none of those quite describe it. It wasn't tingling or burning to the best of my recollection. It wasn't like the normal tingling and burning I get with PN.

I am taking a weak blood thinner now (occasionally), which seems to keep it at bay.

Does that help?

"Curiouser & Curuiouser" (said Alice, thru the looking glass")

More evidence that points towards vascular issues.

Seems that it hasn't happened recently,
since the blood thinner has been taken.

I'd see a vascular doctor asap.

I do know what you mean about the heaviness, but since my diagnoses are PN and RSD, it's hard sometimes for me to know which one is causing which symptoms.

But I would definitely get it followed up upon, especially if there's a chance it's vascular. You can't mess around with that stuff.

At one point, I had an issue where my leg very quickly swelled up, turned purple, and had some of the symptoms you're describing. I called my neurologist, who had me go to the ER immediately. Within about 15 minutes of my getting there, they were scanning for a blood clot (they can do this via ultrasound). Fortunately I didn't have one, but from what I hear, it's nothing you mess around with.

I'm with nide, get it checked ASAP.

Peppermint Patty and Nide, I'm looking into this next week. I forgot to mention that some of my toes turn almost purple sometimes. That sounds vascular, too, doesn't it?

Thanks for your input. This was really helpful.

Every single time I get out of bed, my legs and feet turn so dark purple that they are almost black. I thought it was a circulation problem, so I went to a vascular doctor (this was months after I was diagnosed with PN). He checked for clots and whatnot, but I was fine. I guess at the time I went to the doctor, it was only turning red, not purple. But since then, it has turned purple and now almost black. I look like I am African American--and I am the most pale person there is. To classify me as white is an understatement. I am bedridden--not because of the PN, but because of this problem. The blood is pooling down into my legs and feet and causing the purple--which brings horrible horrible pain and pressure that I can't stand. The vascular doctor said he can't do anything about it, as it is a symptom of PN. He said that he rarely sees it, as it's a sign that happens usually only in the most severe cases or in cases where there is another problem already related to circulation.

Sara Mae,

I am sorry this is happening to you. Have you been to another doctor? Could it actually be a vascular issue? From what I've been reading, it looks like it could be possible.

I will be scheduling a doc's appointment later in the month. Right now, I simply don't have time. Thanks for all who've responded. I greatly appreciate it.

No.. I said in my message that he said it was not a vascular problem. The vascular doctor said that as well as my neurologist. I thought it was, but apparently it isn't.