Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
As some of you may remember, a few weeks ago I was having some issues with a fast heart rate, numb tongue, general weakness and a few other symptoms that I couldn't quite figure out.
I went to my doc 2 weeks ago and he thought it was a neck strain since my neck was hurting so bad again. He sent me home with some instructions and to come back in 2 weeks to see if there were any changes. He checked me out and asked a lot of questions that were pointing towards MS.
Well, last week my sister went to her doctor because she was having a lot of the same issues that I was having, except that she had what she thought was a migraine that wouldn't go away and has since lasted almost 3 weeks. Her doc ordered an MRI just to make sure everything was fine. The MRI found that she has Chiari type 1 malformation. She sent me the paperwork that her doc gave her, then she called me and said "you better have your doctor look into this because it sounds an awful lot like you". Me, being the researcher I am, have done nothing else but research this condition since last week.
I took the research I had found in today to my follow-up appointment and was telling my doctor about it and that it is often misdiagnosed as fibromyalgia and/or MS. He was intrigued and pretty concerned about it, so he has ordered the MRI for me. I am now waiting on the pre-certication from my insurance so that I can schedule it. And can I just say that I am terrified of MRI's. My hospital doesn't have an open sided MRI, so my doc gave me a valium to take before going for the test.
I will be shocked if it turns out not to be this condition, as I have so many of the symptoms. But the good thing is, if it is chiari malformation, it is treatable through surgery and maybe I can get at least some of my life back. I am to the point to where I don't want to go to work, to see friends and family or do anything fun anymore due to the pain. My first born child, Kameron will be 18 tomorrow and we have planned on having a get together with friends and family and I am dreading it. I wish we didn't have to do it. But for him, I will push on and put on that happy face and drudge through the afternoon.
I will update as soon as I find anything out. Thank you all so much for this group. I so enjoy reading everyones stories......the good and the not so good.
Hugs to everyone,
Bobbi
I went to my doc 2 weeks ago and he thought it was a neck strain since my neck was hurting so bad again. He sent me home with some instructions and to come back in 2 weeks to see if there were any changes. He checked me out and asked a lot of questions that were pointing towards MS.
Well, last week my sister went to her doctor because she was having a lot of the same issues that I was having, except that she had what she thought was a migraine that wouldn't go away and has since lasted almost 3 weeks. Her doc ordered an MRI just to make sure everything was fine. The MRI found that she has Chiari type 1 malformation. She sent me the paperwork that her doc gave her, then she called me and said "you better have your doctor look into this because it sounds an awful lot like you". Me, being the researcher I am, have done nothing else but research this condition since last week.
I took the research I had found in today to my follow-up appointment and was telling my doctor about it and that it is often misdiagnosed as fibromyalgia and/or MS. He was intrigued and pretty concerned about it, so he has ordered the MRI for me. I am now waiting on the pre-certication from my insurance so that I can schedule it. And can I just say that I am terrified of MRI's. My hospital doesn't have an open sided MRI, so my doc gave me a valium to take before going for the test.
I will be shocked if it turns out not to be this condition, as I have so many of the symptoms. But the good thing is, if it is chiari malformation, it is treatable through surgery and maybe I can get at least some of my life back. I am to the point to where I don't want to go to work, to see friends and family or do anything fun anymore due to the pain. My first born child, Kameron will be 18 tomorrow and we have planned on having a get together with friends and family and I am dreading it. I wish we didn't have to do it. But for him, I will push on and put on that happy face and drudge through the afternoon.
I will update as soon as I find anything out. Thank you all so much for this group. I so enjoy reading everyones stories......the good and the not so good.
Hugs to everyone,
Bobbi
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A friend sent this to me..As far as I can see, grief will never truly end.It may become softer overtime, more gentleand some days will feel sharp.But grief will last as long as Love does - ForeverIt's simply the way the absence of your loved onemanifests in your heart. A deep longing accompaniedby the deepest Love some days. The heavy fog mayreturn and the next day, it may recede.Once again, it's...
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theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
Please keep us Posted once the MRI comes in...Hugs and Prayers that this is something they Can Treat !!
Best of luck, sue
Sending Hugs and Prayers that things work out well for you.
Please keep us updated on how you are doing
Hugs and Prayers
Good gosh, I'm sorry. I should have explained before.....LOL. Chiari type 1 malformation is where the opening at the back of your head meets your neck is too small and therefore some brain tissue gets squeezed through and the spinal fluid is restricted. There are SO MANY symptoms that are caused by this that I couldn't possibly name them all. Just to name a few of mine:
ringing in the ears
headaches
very sore neck
rapid heart rate (not anxiety)
numbness in face and mouth
numbness in fingers
It can also cause vision problems, balance issues, gagging or choking,difficulty swallowing, dizziness/vertigo, loss of fine motor skills sleep apnea, snoring.
If left undiagnosed long enough it can also cause syringomyelia which is cyst like places on your spinal cord that can lead to paralysis.
During surgery they enlarge the part of the skull to allow more room for the part of the brain that is being forced through. It's not simple, but it is a treatment. And for the first time in a long time, I have hope. That is very strange to see that in black and white, but that is exactly how I feel. I mean, this is friggin' brain surgery!!!!! But it's a better alternative than hurting like this for the rest of my life.
You know, it may turn out to not be this condition, although the doctor seems to think there is a correlation. But for right now, I do have hope that there is relief in sight. I didn't have that before last week with my sisters diagnoses. And I feel terribly selfish, hoping that it is this condition, so that I may find some peace and happiness again.
I'm not sure that I am making sense with this. It makes sense to me, but to others, I"m not sure.
Hugs and thanks for the response :)
Bobbi
HUGS