[warbelsnap]

Hey all. Need some assistance. I've been going to the DR for some additional symptoms for sometime to no avail. Still saying it is Fibro but don't know what else is wrong. Here is what is going on. Been having a lot of muscle twitches/spasms in my arms. My arms are so weak some time I can't even open a bottle of soda. My legs cramp, tingle, and just hurt. My legs also have severe muscle weakness to the point I have fallen down the stairs on 3 different occasions because my legs just gave out. I've had several other episodes where I couldn't get up out of a chair or while walking I had to catch myself on something because my legs just quit working. This scares me. My hips hurt so bad sometimes you can't even touch them and they burn like they are on fire and go down my legs. My hands and feet itch off and on all the time. I am also tired and in pain. I do know the pain level goes up and down but it is up an aweful lot and never below a 5. Does anyone have any suggestions for research for the muscle weakness, etc? Just looking for a point in a direction so we can figure this out. I've done research on the web and when I find stuff, I email it to my doctor for him to review. I have had every blood test, MRI, CT, etc possible. I'm being sent to another Rheumie hoping for some additional assistance with a diagnosis. Thank you in advance for all your inputs, suggestions, and comments. Good luck to all.

Hugs to all.

[warbelsnap]

I forgot to mention that my arms and hands shake off and on all day long. Usually the mornings and the evening are the worst.

[DM]

Hey Betty~ I understand your frustration, as I have FM and it's the most annoying, mystifying thing to live with. I usually tell my DH the day before the weather changes. My body goes into spasm/pain mode. The Mayo Neuro told me that FM sufferers are walking barometers.

I can relate to many of your sx's, but I also have a couple of other DX's that I deal with, so sometimes separating the sx's is a challenge. I also have itching on my palms and feet on and off and it literally drives me bonkers!!

I see a Rheumy, who I really like, but the only thing I don't like about him, is ~ he just wants me to medicate. I am so anti taking new meds. Call it stubborn, but in reality I know that he is trying to make me more comfortable. I had a Neuro and am probably going to be making an appt down the line, as I am unstable in my walking and am having more sx's, so figure another opinion is due.

Hang in there Betty~ and keep looking for answers. This is your body and your life and if there is something that can be helped, then you have to try. FM is so misunderstood~

Sending hugs your way.

[Doody]

((Betty)) that sounds awful. I'm glad you will be going to the rheumy to see what he can find out. I don't think I've had those experiences. Although, when i pick up heavy things, it's like my knees go vacant and disappear. That's gotte be my spine though, it's messed up from a zillion car accidents.

I trip a lot is one of my concerns, and don't know what that's about either. Think I just don't pay attention.

I just don't know what to say about the other symptoms. Those docs gotta keep looking.

[cinnamon]

Originally Posted by warbelsnap

Hey all. Need some assistance. I've been going to the DR for some additional symptoms for sometime to no avail. Still saying it is Fibro but don't know what else is wrong. Here is what is going on. Been having a lot of muscle twitches/spasms in my arms. My arms are so weak some time I can't even open a bottle of soda. My legs cramp, tingle, and just hurt. My legs also have severe muscle weakness to the point I have fallen down the stairs on 3 different occasions because my legs just gave out. I've had several other episodes where I couldn't get up out of a chair or while walking I had to catch myself on something because my legs just quit working. This scares me. My hips hurt so bad sometimes you can't even touch them and they burn like they are on fire and go down my legs. My hands and feet itch off and on all the time. I am also tired and in pain. I do know the pain level goes up and down but it is up an aweful lot and never below a 5. Does anyone have any suggestions for research for the muscle weakness, etc? Just looking for a point in a direction so we can figure this out. I've done research on the web and when I find stuff, I email it to my doctor for him to review. I have had every blood test, MRI, CT, etc possible. I'm being sent to another Rheumie hoping for some additional assistance with a diagnosis. Thank you in advance for all your inputs, suggestions, and comments. Good luck to all.

Hugs to all.

Dear Betty, I was suffering terribly from fibromyalgia and I am now almost 90 percent better. I am happy to share the medical treatments I received.

1) My doctor ordered blood tests for latent viruses. This means getting titers for IgG levels of Epstein Barr, parvovirus, cytomegalovirus and herpes 6. I had 3 of these come back HIGH. I had to take an antiviral drug called Famvir for 10 weeks. IgG is the antibody your body uses for old infections. People with fibromyalgia often have these viruses reactivated. I believe it is the chemical pesticides causing this to happen.

2) Cut out wheat and soy. They are highly treated with chemical pesticides. This means a lot less processed foods.

3) Have a blood test to measure your serum fluoride level. Fluoide is a common pesticide today on fruits, vegetables and processed foods. The symptoms of fluoride toxicity are the same as fibromyalgia. Ask your doctor to look at articles by George Waldbott, MD. My fluoride level was abnormally high. Then, cut fluoride out of your life. Switch to bottled water, brush your teeth with a non-fluoride toothpaste. If you can afford to, eat organic fruits and vegetables, especially grapes and potatoes.

I am a new person, and I wish you the very best. This disease CAN be treated!

[mistiis]

I have been checked for Epstein Barr, and it was positive. I was told by the doc who did it, that it may cause Chronic Fatigue. Something else that you can have checked is your ATP level. Mine always checked below normal, and low normal. I am adding some supplements that may elevate it. It should help to increase energy levels. Time will tell.
Thank you....and welcome to Neuro Talk...

[Coffeebean]

Cinnamon, I find your information very interesting. I know I had a terrible case of mono when I was 18 and I have never been the same since. It left me weak, tired, achey and compromised. It would not surprise me one bit to learn that viruses and flouride play a part in the illness. Very interesting post.

[warbelsnap]

Cinnamon...thanks for all the information. It does bring up some questions. I will have my DR test for what you mentioned. I will also try your recommendations and see what happens.
Coffeebean...I am so sorry for what you have and are going through. I think it is amazing how strong we really are when faced with crisis and don't even no it.
All...my husband tells me how strong and well I am handling the whole situation. I thanked him very much. He is a wonderful man and I am lucky to have him.
Update: Went to the rhuemy on Thursday. She believes my additional symptoms stem from fibro. She thinks what is happening is I am not using my muscles enough so that when I do use them, they tire and get weak very fast. She has put me on an additional pill, Neurotin, 300mg 3x a day (1 a day for 1 week, then 2 a day the 2nd week, and then 3 a day from there on). She told me it would take a good month or so to feel any difference with this. She wants me to come back in 3 months to see how I am doing on the additional med. She said if she needed to adjust it she would. Lets hope it helps. She is trying to reduce the amount of roxicodone I have to take during the day. I'll keep ya'll updated. Remember: we can only do what we can and it is one day at a time.

Thanks to all for your comments.

[DM]

Hi Betty~ Glad to hear your Rheumy appt went well. I had my Rheumy check up yest and was so glad, as was feeling just plain cruddy!

He changed my AD and upped one of my night meds. I must say, I slept better last night than I had in quite a while. He wants to see me in a month to recheck my sx's and see how the med change is doing. It is cold and rainy here, so that added to the mix, does not help.

Just when I think I have FM figured out, it seems to throw another curve ball. I have to learn to ''live'' w/FM and manage it as best I can, but instead- I tend to fight my body. Does that make sense?

I'm glad you updated us and I really hope the Neurontin helps. Take care Betty and sending

[warbelsnap]

DM...yes I do understand the fighting your body. It is very hard to accept that we have limitations and to try not to push those limitations because we are just going to feel it on top of the normal pain, etc. we feel all the time. I think that has been the hardest thing of FM for me to accept. I used to doing whatever needs to be done. For example, my husband got me a cordless drill for Christmas 2 years ago and it was the best present I got. I used it for everything. Now I can't and am having a hard time with it. Let us know how the med increase helps. Sorry about the weather...I can only imagine. Not too bad here...a little cool and windy but nothing like yours. Gentle hugs to all.