-
Have You Experienced Neuropathy; Numbness In Hands Or Feet?
Have you experienced numbness that was not migraine-related?
The Cleveland Clinic website offers a simplified definition of neuropathy:
“It is damage or dysfunction of one or more nerves that typically results in numbness, tingling, muscle weakness and pain in the affected area. Neuropathies frequently start in your hands and feet, but other parts of your body can be affected too.”
I’m a caregiver, not a PH patient, who has recently struggled with weeks of constant numbness in my left foot up to my knee. A long visit to the ER determined I probably have a pinched nerve and the symptom will eventually go away on its own. In the meantime, I continue to follow up with my doctor.
Is your neuropathy PH related or caused by a co-existing condition? Share your experience and how you have dealt with the symptom.
Here is a link to the “National Institute of Neurological Disorders and Stroke” if you would like more in-depth information about neuropathy.
-
11 Replies
-
Hi @colleensteele, my doctors say I have some form of neuropathy. It comes and goes for me. It’s primarily my legs, but my hands go numb at times, too. The more tingling in my legs, and they have always said it was most likely a side effect of PH medications. I’ve had a few tests from neurologists, and nothing really pointed to the cause. I’ve had dopplers done on both legs many years ago.
I hope that you can find out the cause of yours and can get some relief. It can be weird and annoying at the same time. I’m so sorry that you’re experiencing it, and it sounds like it’s quite often in your case.
Here’s some information on the main test neurologists perform for nerve testing, electromyography (EMG).
-
I have neuropathy in my feet and my hands. And it’s gotten worse over the years. I’ve thought that it was probably a long-term side effect of cancer treatment. Never heard that simply having PH could be a cause of neuropathy. Interesting.
-
I was just scrolling and saw this and wanted to chime in, first of all my husband has permanent neuropathy because before PAH he had a stroke. Some things that help alleviate it are soaking in hot water, chiropractic visits and acupuncture. Turmeric herbal supplements can also be very helpful when its painful stinging and burning ..
As for those specific to hands and feet… maybe legs.. not sure on that, have you ever talked to Dr about possible Raynaud’s disease? I have it so bad I have to wear gloves to type it .. I cut the finger tips off hahaha but it is very cold reactive and I have heated gloves and heated boot inserts for winter and it is VERY common in woman over 35. just something to look into!
God bless you all, sending love light and positive vibes into the universe for all of us!
-
@kygon thank you for the information. You mentioned hot water but when I bath or shower the hot water seems to make the numbness worse.
The leg and foot isn’t numb to the point that I can’t feel anything, it just always feels like I’m wearing a tight sock and when I’m barefoot it feels like something is stuck to the bottom of my foot. When I walk the numbness in my knee intensifies.
I say I can still feel but apparently not to the degree I thought. I sat on my porch for a while the other night and apparently mosquitoes were having a field day on my numb leg. It is covered in bites!
I will inquire about Raynaud’s disease!
-
@Colleensteele, oh that sounds terrible I wonder if instead of hot water icing your lower back might help? Or have they told you where your pinched nerves are located and if there is any inflammation? My husband has suffered with continued numbness and has gotten some nasty burns and once he had a fish hook in his foot for an entire day without knowing it, he just couldn’t get his sock off and there was blood in his shoe .. I guess the good news was that he couldn’t feel when we had to cut it out .. We still have no idea how or where he managed to get it in there! hahaha hopefully you wont have to deal with the itchy mosquito bites because of the numbness!
Raynauds is typically noticeable by discoloring of fingers and toes, white to blue or purple coloring and often find you cannot warm up your hands and toes without heating pads or some outside source of heat and we are much higher risk to develop serious frost bite.
@Terry I will inquire with my Dr about Felodopine! Although I have had a bit of luck with heated gloves and those little shake heat packs, I also use the rice bags you warm in the microwave and they are heaven when the office is running the AC on full hahaha
-
@kygon I haven’t noticed any color changes. As far as hands and feet feeling cold, I’ve been that way since I was a child. My husband thinks I’m crazy when I wear socks to bed in the summer.
I almost had a fish hook type of experience a few days ago. I was mowing my back yard and a small piece of our fence had broken off and I stepped on it. The rusty nail went through my shoe but luckily not all the way. I don’t know if I would have felt it if it did because my heal area is one of the numbest areas.
-
Oh no, @colleensteele, thankfully, that nail didn’t go through your show. Also, hope it was late evening and cooler out when you mowed.
Do you have your neuro appointment yet?
-
-
G’Day ky, I have Raynaud’s and suffered badly from it ,white numb fingers and toes ,excruciating pain etc.etc. . My sports doctor back then used to worry about gangrene of the toes as out of sight etc. Used to be agony playing golf on cold mornings and walking to early mass . Approx. fifteen years ago when I told my new Doc. he said he can help. He does six months in the Antarctic every eighteen as the resident doc. He told me the story of watching two Swedes on the open deck of the ship down there working in just normal workwear ( no thermals) and asked them how can they stand the cold. They said they take a tablet 10 mins. before going out.
Felodopine. I now take one every day as it is also used for high blood pressure. Only ever had a white pinky once since. Oh , you get hot flushes every time you take one for the first couple of days.-
Interesting. I wonder if Felodopine is related to B6?
I would hesitate to try to take it, as I have issues with my BP dropping low kinda fast from time to time. So something that lowered it as a rule might not be a good idea. Then again, I don’t think I have Reynaud’s, so it probably wouldn’t be a good drug choice for me, anyway. But the fact that such a drug exists is really interesting.
-
-
Hi @kygon, I’m sorry that Bryan also has neuropathy. I also soak in hot baths. I didn’t know about turmeric supplements, but I do have some turmeric powder I sometimes use in cooking.
Early in my diagnosis, I thought I could have Raynaud’s or some other autoimmune disorder. But then, my symptoms were noted to be from low oxygen. Now, my hands are warmer with my PH meds, which is a side effect. So, we’ve never investigated further after that.
Because Felodipine is a calcium channel blocker (CCB), it can decrease your BP and possibly have side effects like PH treatments. CCBs are one of the treatments for PH. Like my other PH meds, I think dilating the blood vessels helps the blood flow/circulation, offering relief.
I’m not a doctor, but funny, I did ask my PH nurse about this and awaiting her response. I will share when I hear back. If I come across anything else about PH and neuropathy, I’ll share it here. @colleensteele.
Thanks for all the information, y’all; I’m confident many will learn from your experiences.
-
-
@brendad53 I have heard PH patients complain about neuropathy but from what I have read there haven’t been any significant studies on the PH connection. Are you aware of any @jenc?
Log in to reply.