Hi everyone, obviously new here. I know everyone hates the "is my problem <insert diagnosis here>" here question from newbies so bear with me.

I am curious what else can impact hands and feet besides PN that can mimic PN. About five months ago, my left foot swelled up for two days, then it went away. Ice on it made it VERY painful. Then my toes started hurting. Not numb, more like I had walked on very hot rocks and burned the pads of my toes. Then it spread to my right foot after a few months. Tops of toes are very white, bottoms of toes are "normal" (pink) or red. They hurt on and off, more on than off. Same burning sensation like they have been burned on hot rocks. My Primary Care doc added Hydalazine to my blood pressure meds (also on Lotrel) as it is a vessel dialator and helps BP. This seemed to "help" in that the burning went away, but the toes went numb instead. I think I prefer the burning! I had to stop the hydralazine as it is contraindicated for Lupus (and I have been diagnosed with Lupus SLE as well) and once I stopped it, the burning pain came back but the numbness went away.

Fingers hurt but not bad. This comes and goes. The reason I question PN is because the ONLY time I get relief is when I sleep. When I wake up in the morning, my toes feel almost normal. It is after getting up and walking a bit they start to hurt. I sit a lot for work (computer geek) so I am wondering if there are other leg issues that can mimic PN, like Deep Vein Thrombosis or something.

Excercise sometimes helps, sometimes makes it worse. I try to do 10 minutes twice a day on an eliptical trainer. Sometimes my thighs give out first, sometimes my lungs! Yes, I am horribly out of shape but working on it.

Anyway, probably PN and I just called a Neurologist my Rheumy recommended to do the study, but wondered if I should call a Podiatrist as well. Oh, I am not diabetic but know that SLE can lead to PN as well.

Thanks. Appreciate any opinions. I started on a Vitamin B multivitamin the other day with 800MG of B12 in it but not sure that is helping or not (only been a week). With the Lupus I need to be careful what suppliments I take.

dave

Have you read anything about RSD/CRPS?

we have a forum for it here- http://neurotalk.psychcentral.com/forum21.html

not sure if it fits for you - but something to check

Both hands and feet? This can be carpal tunnel (hands) and tarsal tunnel (the feet).

Lupus can affect the joints. If this happens, then the ligaments around the wrists and ankles can be compressed and then the nerves going thru them act up.

I had both carpal and tarsal tunnel with my undiagnosed hypothyroid.

Another thing in the feet it could be (but this would not affect the hands), are cracked or displaced sesamoid bones. An Xray at the foot doctor's will show this.

You can buy the wrist braces for carpal tunnel and wear them at night to see if your hands are better after doing this during the day. The braces keep your hand in a position that relieves pressure on the nerves in the wrist. If not, then perhaps some testing of the neck area for pinching nerves there.

I don't know of any vitamin which would have 800mg of B12 in it. Many mixtures might have 800mcg of folate however. But more commonly they have 400mcg. B12 would be stated on the label in mcg= micrograms as well as the Folic acid. The other B's would be in mg or milligrams.
Can you post your brand on this thread so I can look it up?

People with systemic Lupus can have many various places where the body attacks itself. So one cannot disregard that potential.

BTW Lotrel contains Norvasc as one of the two drugs. This drug causes significant dependent edema in some people. It could be causing swelling in your feet /or legs eventually.
This is a fairly well known effect...it happened to me years ago when my doctor tried it for me. It was so bad for me I could not bend my knees...I stand on my feet all day in my job. I didn't last a month on it.
http://www.netwellness.org/question.cfm/51583.htm
This article claims up to 10% may get peripheral edema:
http://www.rxmed.com/b.main/b2.pharm...)/NORVASC.html

I was on Hydralyzine for several months before the neuroapthy struck along with other blood pressure meds. I did not like this drug as it made me feel funny and my heart would pound. I also read that Hydralyzine can prevent vitamin B6 from being absorbed into the body, so I insisted that my doctor take me off of it.

Like you, I also currently wake up with little or no pain. I don't know why that happens with some people. Maybe the nerves have rested?

there are rare diseases than can cause PN.

One is porphyria.

Also the globulemias cause PN symptoms. These make the blood thick and impair circulation to the feet and fingers.

Scleroderma can also cause pain in the hands and feet as a result of tissue stiffening.

Another rare cause is amyloidosis.

And there is paraneoplasia...PN from a cancer hidden elsewhere.

All of these are not common and often not considered by most doctors.

Hi MrsD.

I mis-spoke (or mis-typed as it were) on the B12. I am taking a Stress B Complex with Vitamin C by Vitamin World. It has 500mcg of B12 as Cyanocobalamin (according to the label). If you go to ** and in the search type in 334, that is what I am taking. Would appreciate any thoughts on it. After a bit over a week on it, it does not seem to be helping much. Wondering if a straight B-12 would be better than the multivitamin. I worry that this one has "8,333%" of the RDA. Seems pretty high. Not sure what the dosage is that most people with PN take.

Heading to the Neurologist Thursday for the PN study to rule it in, or rule it out. Almost thinking I have Gout in my big toes as well as they are swelling, sore to the touch and black cherry juice seems to help them. Not so much the rest of the toes.

Thanks!

dave

500mcg is at the bottom end of effective for those needing B12 and trying orally.

Don't look at that % of RDA... not all of the B12 is absorbed.

Most people see better results starting at 1000mcg daily of methylcobalamin form. (Cyano is slower to act and may not be converted to methyl in the body adequately).

So yes taking B12 separately is a good idea. You can still take your mixture in addition for the other ingredients.

If you are really low -- you can start at 5000mcg daily for up to 3 months then when you are at a higher level you can come down to 1000mcg daily.

Most of us use iherb.com and buy online methylcobalamin:
http://www.iherb.com/Search.aspx?kw=methylcobalamin
These are the choices there.

Remember to take the B12 on an empty stomach.

hi there

I have sle as well, and at a guess I would say that PN is the most likely candidate as it is not uncommon with lupus. The nerve studies may or may not show it, depending on which fibres are being affected. If a person has PN in the small fibres, it will not show up on the tests so a negative test does not rule out all types of neuropathy.

Remember to check that none of your supplements have alfalfa in them (commonly used in supplements) as it can trigger a lupus flare.

nice to meet you dave

raglet

Raglet,
The gold standard test for Small Fober Neuropathy (SFN)
is the Skin Punch Biopsy Test (Not the Sural).
This will detect damage to the small fibers.

Well, I went to the Neuro and he spent over an hour with me. Great doctor. He did the "shock" test first, then the test that included an accupuncture type needle with a wire on it. Did the needle on about six points on my legs. His general reaction is that I do indeed have PN, however he feels based on his tests that it is due to a pinched nerve and started before my Lupus "started". I fell into our pool in October (drunk and very tired - bad combination) and the pain in my left foot started a day after that and has progressed from pain to numbness, and back to pain and has moved to my right foot.

He agreed that I needed more B12 so I am doubling up on the suppliment (1000mcg) and actually am feeling better. My toes feel almost normal however the ball of my left foot (is that large pad that takes the weight the "ball" of the foot?) is sore so walking is still interesting.

Anyway, when I am done with this bottle of suppliment B I will switch to the ones recommended here. He said that "B12, B6 and Folic are the Trifecta" when it comes to PN.

He didnt really have much to say to help me when it comes to "what to do about a pinched nerve that leads to PN" as we got rushed at the end of our visit. Any tips from the group?

I sit all day for work but try to get up at least once per hour and walk around. I also am trying to excercise on an elliptical trainer but that is slow going as I am out of shape and my thighs burn due to the Prednisone and Plaqinil I am on for the Lupus. I am up to 7 - 10 minutes per session and have started lifting weights again to regain some of the muscle mass I lost being sick last year.

Thanks!

dave