Pain in legs and hands

[Gwem]

i wanted to know if anyone else has experienced this...

Starting thursday my legs starting to bother me...more my left than my right....Thursday night it kept me up all night...my jaw hurt..my left side of my head and my wrists ESPECIALLY my left leg from the knee down into my foot and ankle....it was uncomfortable and wouldnt get comfortable and was borderline painful..it finally went away. However after i had breakfast in the morning yesterday that pain came back and my stomache hurt and my intestines...my legs hurt still more the left than the right leg...the musclees hurt but also the bones...that's how i described it...almost like they wre from an allergic reactoini but it wasn't...no swellng or rashes, no new medicatons nothing of the such. It was so bad and hurt my head and everything that i went to sleep for 3 hours...I finally was able to get up later and the pain seemed better and to go away....I started to eat dinner and within 10 minutes the pain started to come back....i called my doctor and he toldl me to take aleve every 6 hours...i also called the pharmacy...the pain lasted the whole night and was agrivated every time i ate...I have to gain some weight and i had seen a nutritionist this past week. The only tinig different was that yesterday i started adding Go Lean Protein powder and soy protein powder to my breakfast shakes, however, i have been on a lactose free diet and have had soy for a year and as a baby, so i highly doubt this is the cause for this discomfort. Has anyone experienced tihs? i am completly miserable, i could at least walk around and do things and now i'm pretty much stranded to sitting or laying down. please any advice would help. My Rhumetologist had also mentioned that he got "fals postives" back on a tst for porphyria...i've already been diagnosed with dysautonomia but the doctors dobut i have porphyria...i'm scared and don't konw what to do..thank you.

[Jersey Girl]

I have had that same pain in my arms and legs and face and head, for me it was worse on the left as well. It was so bad when I was initally ill 2 years ago that I was put on Neurontin 400 mg four times a day and it took 18 months for most of it to lessen to the point that I could get off the Neurontin slowly. I still have the discomfort somewhat but am taking bufferin and get massage therapy to help control the muscle tenderness and knots, especially bad in my neck and shoulders. The left side actually develped some mild numbness and weakness which has yet to go away. Swimming has helped as well. I used to wake up at night and cry it was so bad. I'm sorry you are feeling this way. Hopefully you will improve over time.

[briarrose]

Gwen

The December of 2002 I had nearly exactly what you?re describing. I was in pain for over a month with that flare. I missed work and finally was begging for narcotics the pain was so bad. I didn't even want to walk to the bathroom. The pain could wake me out of a sound sleep. I would have shooting pain through every joint, muscle and bone in my body at times. I told my doctor it was like having railroad spikes driven through my knees and nails driven into my elbows. Sometimes I would even cry out in pain when it would shoot through my body. The rheumatologist never figured it out.

This is completely different from my normal joint pain of course, which is relieved with Neurontin. The muscle cramping in my calves, I think is sometimes caused by low potassium (eat a banana!) I have also tried Quinine with some relief for the muscle aches (you can buy tonic water and it has quinine in it.) The knots in my back are usually relieved with massage, but have been so bad they can cause me to have migraines for days. I?m sure I?m forgetting something, but am very tired right now.

steph

[geneva]

I am so sorry you are going through a particularly bad time right now. I hope that your doctors will find something that will work for you. It is really scary when things primarily happen on just one side of the body isn't it?

I have not had the pain all over as you have but in the beginning my neck and upper shoulder were so painful that I could not hold my head upright. The doctor at Mayo said he had no idea why I was doing that! The only thing that has ever helped was getting massage therapy. I was lucky to find someone who would listen to me and work with me. We had to go very slowly because anything other than gentle strokes would trigger POTS symptoms. It took a year but after that I felt much better although I still have flare ups and continue to see her.

my legs hurt frequently also. I just went through a flare up with significant aches to the point of pain. Forget sleeping. Massages worked until I stood up again although the aching was much less. After 3 weeks I started taking magnesium and in 2 days the aches were gone.

I have never noticed the association of eating with pain. That must be particularly frustrating because I am sure you don't want to eat when that happens. Keep documenting when it happens and what seems to be the trigger and take that in to your doctor. Surely, he/she won't ignore looking at it??? Good luck and I hope you are having a better day.

[morgan617]

i've had so much pain in my back , hips and legs i can barely sleep some nites. they did an x ray. it was "basically" normal whatever the heck that means. i wonder if maybe the protein shakes have too much calcium or some type of mineral that is causing the pain. since that's the only new thing you've done you might check with the nutritionist. i know i can't drink boost without getting sick, so who knows. just a thought. morgan

[geneva]

morgan. interesting thought. I know that calcium supplements of any kind cause joint pain for me.

[Deb]

Before I was diagnosed, and for a short time afterwards, I had a lot of pain, but it was on my right side. I still get it a little, usually when I'm tired from doing too much. After I rest, it usually goes away. I have no idea what caused it, but I think that when I drastically increased my salt intake is when it mostly went away.

Hope you feel better very soon. Deb