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Posted 1/8/2009 3:12 AM (GMT 0)

Hi everyone,

This is the first time I have ever been on a forum, but it seems like a safe place to be able to chat with others that have this bizarre syndrome, fibro. I have been diagnosed for about a year, prior to this I have had problems for 3 years, tested for MS, lyme twice,lupus, Als,etc.. all the blood work normal.It all started 3 years ago while running(I used to run 5k a day),I had a backache. The pain got worse and then I had all the xrays, mri's all normal.Then weird things started happening, a feeling like water running down my legs, burning sensations on my arms and legs, numbness in my hands-my hands always go numb with the least bit of cold. My symptoms are too many to list. Does anyone get a weird feeling in their head, it is so hard to describe, but it islike a buzzing that lasts for a few minutes,I have to stop what I am doing. I also have dizziness. I also have shaking inside of me like a trembling internally. Does anyone else get this?  My dr is sending me to an internist that specializes in Fibro for maybe some other help cures he may have and to also see if fibro is really what I have. 

Nice to have others to share with.

Posted 1/8/2009 3:21 AM (GMT 0)
Hi and welcome.  I also have burning down arms but also neck and upper spine, and I also have the numbness that is quite common but as you said the symptoms go on forever.  I dont get the other things wrong you mentioned  though sometimes I get a feeling in my head like its missed a beat, doesnt make sense and cant describe.  You are on the right track to see specialist.good luck  .           sue2z

Posted 1/8/2009 3:28 AM (GMT 0)

Hi, and welcome.  I have many of the sensations you experience and have also been through every test known to man.  I feel that water-thing and keep feeling my clothes because I am sure they are wet.  The skin on my legs feels like it is 'shriveling up' when I go outside in the cold, like it is too tight or something...it's hard to explain.  Sometimes when I turn my head I feel this buzz, or swishing sound.  After I was diagnosed, I had this vibrating-thing that wasn't just a sensation...I was really vibrating and after several trips to the ER and nothing was found, it almost got to be funny.  I would lay on the couch and my husband and I would watch the vase on the table across the room shake.  The first time it happend, I thought there was an earthquake but no one else felt it.  It was similar to sitting on a washing machine on the spin cycle.  Burning skin sensations are typical with fibro.

So...all I can say is I have experienced just about every fibro symptom there is.  I hope you find something to help. It's hard to believe a condition that really causes no physical harm can be so dibilitating!

donna

Posted 1/8/2009 3:45 AM (GMT 0)
 I hope I am replying correctly, but thanks for the support. It is also nice to hear when someone confirms what you are feeling. Sometimes I feel crazy. I work full time as a teacher, and have 4 kids. I am, obviously very busy, but I am exhausted, and by 3:00 in the afternoon I have to push it to continue. I have severe back and neck pain, and by the evening I am limping. The hard part is that is has effected me because I dont like to do as many fun things as I used to because I feel weird outside of my comfort zone. I get so many weird sensations and feelings, it is uncomfortable. The other weird thing I get is if I bang my hand or arm it gets painful, like that feeling when you hit your funnybone. The other day we took our kids bowling and my 8 year old gave me a high five, the pain was so bad and my hand was tingling, I felt bad because my son new it hurt me. Oh yea, does anyone get bad headaches and bad heart palpitations?

thanks for listening

Posted 1/8/2009 4:44 AM (GMT 0)

Welcome to the forum!

I have had alot of the symptoms you talked of. Dizzy once in a while. My hands and feet will go numb for no reason at all. You are right - there are so many funny symptoms and sometimes I worry at first, but know that the doctor is going to say it is a symptom of Fibro.

It is great that your doctor referred you to a specialist. They know so much more and hopefully will give you something to help with all of your symptoms. I applaud you for being able to teach full-time and juggle kids at home. I don't think I could do it. I also have the pain in certain areas that are very touchy. If someone bumps or touches it, I can just about scream because it is so painful. Fatigue is one of my biggest problems right now. I have no energy and can sleep all day, so I am not surprised that you are exhausted after what you take on every day!

Well I hope things go well with the specialist. Please keep us posted and feel free to ask questions or jump in anytime. Also, the 2nd thread down on forum is called Fibro 101 - it is a very good place to start. It gives advice on what you can do to help pain and many other interesting things. Reading that really gave me ideas on helping my pain and learning about Fibro. Good luck!

Margie

Posted 1/8/2009 8:57 AM (GMT 0)
Hi Momteach & welcome.  I have most of the same symptoms you have but not the water running down your legs.  I do get a buzzing in my head sometimes that feels like my brain is vibrating or something.  It is really hard to explain.  I haven't had it since I was dx'd & have been able to sleep. I have no idea what it was or why it quit but it was real scary.  I get the body vibration when I am really flaring, it feels like my insides are trembling.  Such weird symptoms & they all come from the same illness.  It is so helpful to be able to come here & be reassured that we are sane & probably don't have something else going on.  It is always best to have it checked out anyway but it does releive the stress & anxiety about it until then somewhat.  Be sure & mention it to your Dr.  Come here often, the people here are kind & helpful.  Hugs, Denise

Posted 1/8/2009 1:39 PM (GMT 0)
Welcome Momtech!!!
This is a great group!! I second what the others said about bringing back some of the stuff you learn from your specialist... wish I could find one of them!
I get that vibrating thing all over my body, as a matter of fact that's how my last flare began. The buzzing in the head.. yes.. I get that too. Pain issues when I run into something.. OH YEAH. I also get headaches, especially when I'm in a bright light situation or really noisey situation. Sometimes my brain really has a hard time sorting things out when there's a lot of noise, it feels like I have scrambled circuts in my brain.
Be well,
Posted 1/8/2009 4:01 PM (GMT 0)
Hi momteach and welcome to the family. It seems just when you think you have felt every weird sensation you can from fibro something else happens. You are doing great if you can teach and mother 4 children. Fibro loves our backs and necks. Three in the afternoon seems to be the magic time when our energy leaves us. I don't work or have children at home but I still don't have the energy to do many fun things.

 

The fibro 101 thread is full of great info. Read and ask questions and we are here for you.

 

Suez, I like that, you brain skips a beat, mine does too.

 

luv and hugs

Marlee

Posted 1/8/2009 4:16 PM (GMT 0)

I clapped my hands together the other day to get my dogs attention and they tingled with pins and needles for about twenty minutes!  I guess we aren't candidates for the 'as seen on tv' Clapper that turns your lights on and off!

donna

Posted 1/8/2009 4:47 PM (GMT 0)
Hi, I am new! I wish I were new! HA!HA!HA!

I have PTSD, along with fibromyalgia. I also have allergies. Asthma. Going twice a week for allergy shots. Wish I had a local support group. I am thinking about starting one for fibromyalgia.

I am so looking for friends. Please write back. Hope I hear from someone soon.

I am taking xanax for anxiety, Neurontin, synthroid, and asthma meds. I also take lots of vitimins. sublingual B12, complete B, and many others.

Linda R.
Posted 1/8/2009 7:38 PM (GMT 0)

Fairysky,

Welcome to the forum! I have reposted your reply on it's own thread so more people will see it. If you ever want to post a new message, just click on "new Post"

Happy you found us. It is a great group here and there is so much to learn and just talk about. I hope you stay around!

Margie

Posted 1/8/2009 11:21 PM (GMT 0)
Hello, nice to meet you!!

Yes, I do get the wetness-feeling, and burning, and numbness (numbness not so much as I used to have it though - but it still happens!!) I don't exactly know about the head feeling you get, I am sorry you experience that and have to stop what you're doing at the time. Sometimes when I turn my head I feel this buzz, or swishing sound, just like Donna has described! And dizziness, not so much as what I used to get, but I do get very lightheaded in the heat, like hot showers and whatnot (still trying to figure out what is going on with that).

I am suffering actually from poor balance due to the Fibro, even though my Rhuemy has told me it isn't the Fibro(I think she might just not want to believe it seeing as how I am so young!!), I have gotten many peoples' opinions that it is indeed the FM. Do you have balance problems at all?

And I have never had internal trembling, never even heard of it!!! This illness is just crazy, everything that goes along with it!

And yes, I get bad headaches, almost ALWAYS have them, especially when I'm in light or around a lot of people, like patti has said. I don't know about any heart palpitations, my heart feels "odd" at times but don't really know how to explain it... can anyone tell me anything about them so that I know whether I have them or not?!

Take Care, momteach!

______________________________________________________

21 years old

Fibromyalgia, Bipolar Disorder, OCD, Irrational fears

Posted 1/9/2009 1:47 AM (GMT 0)

JCgurl,

I get light-headed and the dizziness at times. I also have the balance problem & it seems to get worse as time goes by. I get the burning sensations on my feet & legs sometimes.

I could go on & on. There are so many different symptoms. Not everyone will have the same or have them as severe. Just depends on the person.

When I first joined I was so surprised to here others talking about symtoms that I had. It is great to talk to others who are experiencing the same things.

Hope you stay around and feel free to jump in or ask questions anytime.

Hugs!!     Margie 

Posted 1/9/2009 3:48 AM (GMT 0)

Hi everyone,

Thanks for all of your responses and support. It is really great to hear from people who get it. When I explain it to my husband he listens, but he doesnt get it and will offer some type of advice that is more just to be nice. Today was a tough day at work. I am special education teacher in a high school and it can be very tough and I just cried today at one point from the overwhelming stress and work(of course not in front of the kids) and I find myself so much more sensitive and cry easily.

I hear alot of people say they take tramadol, does this work. I was never one to take pills, I usually get the prescription fillled but never take it. But I have to take my hydrocodone at night for bed because the pain is so bad. I told my dr if I really took it when I needed it would be all day, but I only choose to take at night and just try to get through it.

I also have endometriosis and raynauds syndrome, which I have read relates to fibro someway.

Thanks again for the support!

Posted 1/9/2009 4:56 AM (GMT 0)
Hello! I'm new too. I've found that this is a great place to find some support and understanding.

I have several of the sensations you've mentioned. I also first noticed a problem during my usual run. I had a pain in my right side that got worse and worse. I eventually had to stop running because it would not heal. I really miss the mental freshness that comes from a good run. I have been swimming, and that's almost as good, but my body really misses the running.

Since that first pain in my side, everything has gone to the dogs, so to speak. I've fallen apart! My mother gave me a book on fibro, which has been helpful to have when a new symptom pops up.

I wish you the best of luck and the best of health!
Posted 1/10/2009 2:49 AM (GMT 0)
Hi,

I apologize if I am all over the place, am I suppose to post new or reply?? Anyway, I also started all of my fibro symptoms after the pain started from running. I miss my intense running. I do try every few weeks to get a 3 mile run in, but I pay for it for the next 2 weeks. I am an incredibly active, or was, person. I continue to fight it but as we all know it is tough. I have researched and read a lot of books and articles, but this forum has been the best medicine so far. I do push my limits physically, but it is my way to feel okay, and I dont like my kids to worry, but they do, and they always ask mom are you okay? I usually say oh yes I am fine don't worry, and continue to act "normal".

The other question I have, does anyone have issues with their teeth. I have or had very nice teeth, and all of a sudden my dentist says my mouth, within a short period of time, has a lot of new cavities. He kept pressuring me about what candy I eat, or sugar. I continued to tell him, none! Thats the truth, I am a health nut with eating and do not eat any fast food, or junk food, no cake, cookies, etc... He is very confused.


Thanks again everyone, what a great group!
Posted 1/10/2009 4:05 PM (GMT 0)
Hi momteach,

 

Yep, you're posting correctly!  Just hit the reply button and type away! Always start a new thread topic when you need to talk about a new issue or have a new question.

 

In regards to your teeth.  Do you have a dry mouth?  A common issue with Fibromyalgia is an autoimmune disorder called Sjogren's Syndrome (show-grins).  A blood test will confirm if you have this.  That might be the reason for your increased cavities.  If your mouth isn't getting enough saliva, your teeth will unfortunately brunt the results of a dry mouth.  Your eyes and nose can be affected by Sjogren's too.

 

Ginny

Posted 1/10/2009 5:44 PM (GMT 0)
hello Momteach,

I've been lurking around for a while, and yes, there's lots of valuable information and help here.

I taught high school special education. It can be very stressful and exhausting. And the paperwork!!! Enlist all the help you can from the kids, take it one day at a time. My doctor told me that walking was one of the best things to do, and I found that swimming was wonderful (ok, I do a mean dog paddle, but that's moving, right?).

I'm retired now due to the fibro. My daughter is in graduate school, so I dont' have little people to care for.

Good luck and welcome.
Posted 1/10/2009 8:22 PM (GMT 0)

Hi Ginny,

Thanks for the information. I have read about Sjogrens Syndrome in some of my reasearch and I was wondering about that. I also have thrush a lot,I am not sure if this is another symptom.

I will follow up with my doctor. Is there a cure or treatment for this?

Thanks for the help

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