New to the forum?

Sign Up Here!

Already a member?
Please login below.

Forgot your password?
Need Help?  
Numb Feet & Hands
6 Replies
ccc - May 6

Does anyone get numb feet and hands that also turn red?


Fantod - May 6

ccc - You may have Raynauds which is a perk associated with Fibromyalgia (FMS). You can read about it under "Associated Conditions" on this website. You need to see your doctor about this problem. Take care.


Cher0208 - May 8

I have had about annoying, uncomfortable and scary! For me- and this is not to scare you, it was in my hands and feet for a little over a week before spreading to my entire body. I felt the nub sensation on my face, ears, head...literally everywhere. I went right back to my neurologist. Had an MRI or the back and brain. Results were normal. We are now looking into Porphyria, an extremely rare disease. The numbness subsided a while ago. My symptoms tend to come and go though. At this present moment, my throat feels tight and my vision isn't right. So if its not one thing its another.


January - May 8

Hi Cher - been wondering where you were. Please keep us posted on your "adventures" with porphyria.

Did you check the Amer. Porphyria Foundation? It may not be as "rare" as people think - just like celiac, it may go undiagnosed in most people because drs. don't know about it. The head of the foundation called me back and told me that getting a diagnosis is very tricky because even the labs don't know the proper procedures for running the tests. She recommended getting your blood drawn, then packing it yourself in dry ice and sending it to a Quest Lab in California that does know what it's doing! She also had names of drs. who would work with your own doctor to help you get diagnosed correctly.

I think I posted a remark about that, but don't know if you saw it. The Foundation was very, very helpful, responsive and knowledgeable. I suspect I may have had intermittent bouts with porphyria, brought on by antibiotic use. There is a list of drugs that can cause symptoms of porphyria, available on line thru a link at the American Porphyria Foundation. Hope you're doing well.


Cher0208 - May 10

Hi January,

Have been having a hell of a time finding a hematologist that will accept my insurance. I did see that comment a while back and wound up calling the American Porphyria Foundation and they were closed. I'm in NY and they are on Mountain Time or something. So instead of being on top of this, I just fell into a serious funk and had to take a break from this full time job of finding a good doctor and a correct diagnosis. Today after work, I am getting back on the horse and will call the foundation again. I have tried to look through my health insurance website but no luck. Forget someone who knows about Porphyria, I can't even find a Hematologist who will see you if you don't have cancer!

Symptoms have subsided in terms of numbness. I mean I still feel numbness in my fingers and toes but its not noticeable. My right eye is now being affected. Feels like I am losing vision. And I have been having MAJOR lower back pain. I thought it was just a bad case of my monthly friend because it was all around the same time. But that is gone and my back hurts a lot. My legs almost feel weak. If I remember correctly that was a symptom of Porphyria...back pain. And I have been getting increasingly worse abdominal pain.

In terms of the lab, we use Quest Lab here in New York and I had to go there directly to give urine and have blood drawn. My doctor consulted with a Hematologist and they said my tests are indicative of the type of Porphyria that affects your skin if anything. But my symptoms are all stomach, neuro and vision etc. My skin, thank God is fine aside from the occasional acne. That doctor said it was probably false positives.

Any advice? Besides calling the foundation which I plan to do today and will keep you updated for sure.



lucky13 - May 10

Def. talk to your Dr about it next time you go in, It could be Raynauds with the color change, have you noticed the change of temp bothering your hands and feet. Usually with Raynauds your feet seem to be cold alot, or your hands/feet will change color when cold, or there will be pain when you hold something cold.
I am talking to my Dr this week, I have noticed that at times only parts of my foot will go numb, like the bottom of a couple toes, and other times it's my whole foot or hands.
I also think I could have Raynauds so I'm going to bring that up to, buit in my case, I don't my toes going numb is connected to Raynauds since it's not temp related. IDK though.
Good luck


January - May 11

Hi Cher - From what I learned talking to the people at the Porphyria Foundation, most labs don't know how to run tests properly - even Quest labs. She gave me the name of a specific lab in California and suggested I pack the samples in dry ice and send them myself. She also told me there are EIGHT people in the US who are experts in porphyria - some of them will work with your doctor - the Foundation can refer you.

Apparently most hematologists don't know much about it - so I wouldn't necessarily go by what they are telling you! (Sounds just like the ridiculous run around with celiac disease -- most GI specialists don't know anything beyond the very limited (and incorrect) information given in med school. It's been considered a rare disease - but the fact is drs. weren't educated about it, and it's not as rare as they thought. It took people getting militant and making noise to raise awareness.)

Hope you can get in touch with the Foundation, and talk with someone there who is helpful. If you go to their site, you can follow links to lists of drugs that aggravate porphyria symptoms. Some lists aren't so good, some are quite comprehensive - you'll have to look for the big list. I was stunned to find that ALL the drugs I have ever reacted badly to (from severe vomiting to neurological symptoms) were on this list as causing porphyria! Maybe you are taking something that is causing your symptoms to flare? I think it's interesting that a lot of fibro people have bad reactions to drugs -- hm, maybe some of us have porphyria?? The neuro and GI symptoms seem to overlap fibro.

It's a pain to follow up on all these things when you don't feel well. I haven't gotten any blood tests yet, as I've got a backlog of tests I need to get done. There are other things that could be causing your back problems. I was surprised to find out I have stenosis - it causes extreme low back pain and weakness in my legs. The CAT scans never showed this up. Only when I got a sitting MRI did I get a proper diagnosis on that front!

I hope you get to talk with the Porphyria Foundation. I would guess that the people who are telling you the positives were false don't really know much about it! (Just a guess….since most people don't know about it!) : ) That's why we hear stories of people going 20 years before they get properly diagnosed, especially if it's something "unusual."

From what I read, the skin problem associated with porphyria is not acne but blistering and photosensitivity. Also, there is a lot of controversy about which tests give really accurate results. If the blood samples are not carefully handled they will degrade and provide false negatives. The 24-hour urine test is somewhat controversial.

Anyway - was just wondering how you were doing. Hope you get some answers and feel better soon!



You must log in to reply.

Are you New to the forum? Sign Up Here! Already a member? Please login below.

Forgot your password?
Need Help?