My daughter has been experiencing excruciating pain in her legs....can't stand or walk. She screams if anyone slightly touches her legs. I tried to elevate them but she just screamed as they were being lifted. This started yesterday morning...although she has complained of aches and pains every now and then nothing this severe. Anyone out there have suggestions or similar occurances. My thoughts and prayers with all.

If she is having pain that severe I would get her to a doctor pretty quickly. They need to check out her nerves and make sure nothing serious is causing that pain, and even if it isn't something serious, give the poor girl something to help her be more comfortable! I would get her in to her pediatrician if you can, and if not then I would go ahead to the urgent care or ER.
Does she have dysautonomia? How old is she?

Everybody is so different, it is impossible to make any suggestions here on this forum without really knowing your daughter.

If you haven't taken her to the ER, I would suggest doing so. Pain in her legs could be many things. Make sure she is fully hydrated.

When my son used to have pain in his legs, I found that he was literally having "growing pains" and that calcium and other vitamins helped alot. I also found out that keeping him very hydrated helped alot.

Keep us posted!

My best friend has diabetes type 1 and last year she got the feeling that you are describing except it was her whole body. My friend could not even dry herself and her doctor said that it is nerve damage. I'm not sure of the treatment but it went away after a few weeks. Definantly go to a doctor straight away!!!!

I guess "suggestions" was the wrong word to use. I wasn't really thinking. Yes she has been diagnosed with POTS. Yes we went to the ER. What did we come away with? That it is all in her head.....that we are enabling her by taking her to the doctos for evaluations....that she needs pschological care. I am disgusted with the Medical system here. We will continue to see the one doctor who believes in her except he about 4 hours away. Not necessarily the easiest solution in a crisis.

Ugh, there is nothing worse than being a child, looking to an adult for help (in this case a doctor) and the doctor NOT believing what the child is saying.

My son went through that for 2 years. It's hard enough as an adult to go through that, but as a teen, it's VERY difficult. Who do you trust?

Princess, I didn't know about the POTS diagnosis, but now that I know that, I can tell you that being fully hydrated at all times helps my son A LOT. The pains in the legs are common for him if he's not hydrated. If the blood volume is low (the blood is actually thicker) it can cause pain in extremities big time, and makes it harder for the heart too.

My son HATES the ER, they never know what to do, and look at you like you're a martian when you say either POTS or DYSAUTONOMIA. We have avoided the ER just by pouring down the liquids at all times (he has to drink 1 gallon a day)

I have a great doctor and I will be seeing him on May 13th. I am going through a lot of pain in my legs. I feel as though one morning I will wake up unable to walk because of the pain. I will post information on the 13th after my appointment. I pray that everything will get better for your child.

I had pain all over once, and it was because I was severely low in iron....I hope she starts to feel better.....

Hugs.

Some cut and paste info:

Abnormal nerve sensations such as pins-and-needles, tingling, burning, prikling or similar feelings are all known as "paresthesias". They usually result from nerve damage due to pressure, entrapment, or nerve diseases. Continued nerve damage can lead to leg numbness and permanent loss of feeling. Any abnormal sensation needs medical investigation.

Is it unilateral or bilateral? - symmetrical involvement of both legs suggest peripheral neuropathy.

History of trauma or injury to leg? - e.g. broken leg or foot may damage nerves and cause leg paresthesia.

History of a back injury? - may suggest spinal canal stenosis.

Bilateral, muscles twitching periodically, extreme pain in joints, she describes it a deep in side the knees. No history of back injury.

There is no visible swelling anymore. Joints are popping as if something is breaking in two. This causes her to scream out in agony leaving her nauseaus. The motion of bending the knees to sit or stand seems to be most painful as well as sensitive to the touch. Sitting or lying with legs outstretched seems to be most comfortable so long as no one touches them as they are painful to the touch. When her muscles twitch it causes more pain in her joints.

We are now being referred to a Rheumatologist by her PCP but I wonder if this could be from all the fainting spells. She often falls knees first. At the onset of the pain, swelling, and inability to stand or walk we were told togo to the ER. ER doctors did nothing, she was admitted 12 hours later though, but no testing was performed. What they did say is that it was all in her head. Suck it up and get back to school. What a joke!!!

Her bp two days ago was recorded at 79/40 she is constantly dizzy and baring weight on her legs is excruciating. I've been wondering whether an orthopedic doctor would be one to see. It's been 11 days since the onset, tylenol does nothing, and the alieve just tears up her stomach, so she refuses to take anything else.

I feel as though most of these doctors assume we are one of those patients who get off on going to the doctor. I assure you we are not, if I didn't believe she was in pain, dizzy, fainting, fatigued, having chest pains, shortness of breath, vision blurring or loss of, other aches and pains I would not be so quick to have her assessed. What is wrong with the medical profession that they can't let go of their ego to say "I don't know what is going on, let me keep looking, or find someone who can help her" ?? Instead we hear that she is making this up. How dare they make assumptions when they don't see her day in and day out.

We do have a Cardiologist, who believes in her and specializes in Dysautonomias especially POTS but he is 4 hours away. Her PCP is here only 5 minutes away, but I don't think he fully understands though he too believes in her. I do know that he has been speaking with her Cardiologist so that is a good sign.

No more ER's for us!!!

Our prayers and thoughts are with you and everyone else who is suffering,

I truely understand what you daughter is feeling. I have severe leg pain also. I have been taking Lortab for 2 years now, it is the only thing that helps me function and be able to walk.

I hope someone listens soon and she gets some relief from the leg pain. Will her PCP give her some pain medication?

Thank you Xena, we saw a Rhuematologist today that we really liked. I can't leave anything to chance since RA runs in my family. She was very patient, and thorough. Took several vials of blood to check for several different autoimmune diseases. She seemed very enthusiastic about speaking with my daughters Cardiologist,and PCP especially after we told her about POTS. To our surprise she seemed very knowlegeable in that area as well and wants to work closely with the other doctors.

So for now it does seem like someone is finally listening to us with her leg pain.

On our way to Dallas tomorrow to meet with her Cardiologist again.

Becky

I am sorry to hear about your daughter and her pain... you both will be in my prayers that someone finds out what it is, and for it to go away.... Lynn

I am so sick of hearing doctors say this is in our head that is so not the case, you just want to tell some of those doctors to go to hell! That is the doctor saying I really don't know what is going on because this condition is not normally heard of! They need to go back to school and get current on new diseases and disorders!!!!

Hi All, sorry it has taken me so long to reply, but it has been quite hectic since my daughter developed her leg pain. The pain eventually began to migrate into her lower back, fingers, wrists, elbows, and shoulders. Her Rheumatologists calls her every week to check up on her regardless of whether she has an appointment or not.

Our main concern was getting her through graduation and we did! YAY! We had a house full of family in just to see her graduate. It was quite heart wrenching to see her walk across the stage assisted by a teacher. She released my daughter long enough for her to walk a few paces to receive her diploma and then held on to her for the rest of the walk. We were all crying for so many different reasons. Happy that she was able to attend/graduate, happy that she was walking...at a snails pace but that's ok...we loved it!! Sad that she was in so much pain during one of her most important days, but thankful that she didn't pass out as it was very hot and humid. Glad that its over, now we can concentrate on taking it easy, healing, and preparing for the next phase of her life....college.

Hugs to all!