I was recently diagnosed with neuropathy...I think. Being in my 60s, I was given a scrip for gabapentin, told my problem "sounds like neuropathy" and sent home.
I am not diabetic and apparently finding the reason for the neuropathy isn't important at my age.
I have been on the web searching for information and according to my symptoms I have SFN.
I have edema around my ankles. I was told that neuropathy does cause edema. The gabapentin has made this condition worse. I've been taking 300 mgs in the morning and 600 mgs at night. I called the doctor's office today about the swelling and was told to take 300 mgs at night. I don't know if this low dose will help the pain.
I'd appreciate knowing if any of you who have neuropathy also have edema and what if anything has helped you. I would REALLY appreciate a response.
I have SFN too that effects my feet. I also have edema but the dr's don't seem to take much notice. I have pointed it out to my gp and the rheumy and they both ignored it. Sometimes my feet are so swollen and it doesn't seem to matter whether I am sitting or standing or walking alot. They just are very puffed up.
I am on a water pill because of high blood pressure but it still doesn't stop the edema. and hot weather makes mine so much worse.
I am sorry I don't have any answers, but wanted you to know you aren't alone. Perhaps your doctors will have more advice than mine did!
Hope it works out for you as I know how annoying it is and it just doesn't look nice either to have puffy feet and ankles.
Thank you very much for your response Daisy. I have in the past posted and not gotten a reply and this sure makes one feel alone.
I also am on a fluid pill (12 1/2 mg HCTC), an ace inhibitor - 40 mg lisinopril and a cholesterol drug - 20 mg pravastatin. I know the pills for hypertension will cause swelling but it didn't until I had the burning, stinging and creepy crawlings on my feet and legs.
You remind me of myself! I too look at women at church and see the ankle bone and envy them - mine are swimming around in fluid! God forgive me but I am envious!
I'm thinking about going to a neurologist. Have you been to one? I don't think there's much to be done for SFN but I'd really appreciate a doctor explaining the measures that I can take to make things a bit easier AND get rid of this edema!
I am a healthy eater, no salt or fat, low carbs and very little sweets. I don't' know what more I can do.
Yes, hot weather does make it worse. Do you live in the south?
I have had the problems with my feet for 5 1/2 years but only got diagnosed by the second neurologist I saw 2 years ago. I do believe that a neurologist is the best doctor to see for SFN.
I have been given anti depressants. anti-convulsants, Vitamin B12 injections and so many medications that haven't helped a bit. Right now I am struggling to get by with acupuncture and some pain meds but nothing takes away the awful pain and burning.
I live on the west coast of Canada. I will be happy when the cool weather comes!
I hope that you get some answers and if you do, please post and let us know.
Hi Annie - I have SFN and the edema like you. When my feet started swelling so much, my PC gave me a second diuretic in addition to the one I was already taking for high blood pressure. This helped the edema quite a bit, and my blood pressure readings were okay with my pc, but having my blood pressure so low made we dizzy when I stood up quickly, and I decided to give up the second diuretic--back to puffy ankles.
I hope you see a neurologist and get some more thorough testing done. Finding the reason for neuropathy is important at any age as in some cases the cause can be found and treated thus getting rid of the neuropathy or lessening its effect. Having your doctor send you home with Gabapentin and to self-diagnose your neuropathy as SFN is completely inadequate. Good that you are researching neuropathy, armed with information you can better direct your medical care to get the care you need and deserve.
Please keep posting to let us know how you are doing. Best, Ruby
Thank you so much for your reply. I have an appointment scheduled with an Internist in February. He is suppose to be a very good doctor and will dig until he finds the root of the problem or send me to a Neurologist.
My problem has been largely ignored by the medical profession and I guess I wasn't forceful enough.
I started the 'tingling' and burning burning feet around '96. My PCP said he didn't know what it was. I changed PCP later on and this one sent me to a Neurologist. The test (EMG/NCV) was negative. I was told they couldn't find any reason for my complaint. The PCP said it might be vascular and left it at that. So, like them, I just ignored the problem until now.
I've learned by researching via the web that a negagtive EMG/NCV means it could be SFN. I wonder why the doctors didn't think of that!
Finally a month or so ago, I went to a GP and insisted there was something wrong with my feet/legs. He checked the circulation in my ankles and behind the knees. He then mentioned it might be neuropathy and gave me the scrip.
End of story for now I guess.
Thank you kindly for having replied to my post Ruby.
Hi Anniie i have spine probs, but a couple of months ago my feet swelled up there sore too in the bones on the top of my feet and ankles they keep swelling and a few weeks ago i developed a rash. My doc gave me cream, now its swollen up to my knees the skin is really dry and cracked but the doc does nothing, i;m on gabapentin also bp tabs.........I;m fed up.........Marie