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New here and sick of Fibro
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Yes4coffee posted:
Hello all, my name is Jenn and I was dx with Fibro back in 06 when I was pregnant with my last child. I have recently been dealing with a constant headache since November 2010 and it hasn't gone away at all. All of the doctors that I have seen have all agreed that it is caused by the Fibro. Nothing takes away the pain and I have just had to try to live with it. Somedays it is worse than others, I don't get off the couch very much anymore either. I am also battling Bipolor Disorder and depression, so I take a lot of meds too. Still haven't found the perfect combo to help with all. 3 weeks ago, I went into a fibro flare-up in my back and right hip. The pain runs all the way down to my right foot. I went to the walkin and the dr put me on a steriod for 10 days and it seemed to help some, now that the steriod is gone, the pain is horrible and I lose the use of my leg a lot. I am going to the RA Dr this morning. I am up right now because I couldn't sleep anymore because of the pain in my back/leg and head is really pounding! I am so sick of this. I have been told by a few dr's that I should go to the MAYO clinic but I don't know anything about them or even where they are. Any one out there know anything about them? Thanks for listening
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TomJust responded:
HI Jenn, I Tom. Sorry to welcome you here when you feel so unwell...but then again I don't suppose anyone thinks "I feel GREAT! Maybe I'll join a Fibro support group."

I have been dealing with daily headaches which expanded into all day headaches. I have found relief (at least for the headaches) without drugs. Neurontin took away the headaches but made me suicidal. Tramadol made me angry and aggressive.

All our neck, head, shoulder and upper back muscles are interrelated. Your headache could be starting somewhere else and manifesting itself as a headache.

I start with heat on my neck, lower skull, shoulders and back. I have an x-large heating pad and also a moist heat microwave cape thing. Fifteen minutes of heat and then mild neck stretches. Head rotations, looking down, looking up, stretching left and right to stretch the side of the neck and the trapezius---all held for a count of five and only to the point of stretch not past it. This is very gentle stretching. Throw out the No Pain No Gain idea. I follow with an ice pack, hitting all the pain spots and especially the base of my skull until they're numb.

For a while, this actually made my headaches worse as everything opened up and those neglected, unused muscle began to wake up. They are almost gone after just a few weeks and if I feel one beginning a stretch session relieves it.

Another good stretch for the base of the skull where a bunch of bones and blood vessels and nerves come together to enter the brain, is to rest the very base of your skull on a raised object-I use a 2" cake pan- and scoot the rest of your neck and body away from your skull and the pan. It stretches and opens those last vertebrae at the top and by bending them in that direction, it opens all those channels for easier flow into the brain.

Depression and fatigue are now the two worst symptoms of Fibro that I currently face. It is a an extremely disheartening syndrome and it's easy to fall into the "foreverness" trap of these feelings.

I'm sure you'll get a rousing welcome form the rest of the group and more tips to help you cope and yes, even improve how you feel.

All my best to you,
Tom
 
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ScooterPooterPuddinPie responded:
hi Jenn,
so sorry you're feeling so bad! My fibro flares tend to manifest in my hands and wrists a lot so I'm left doing nothing at all, and I understand how frustrating that can be. I also have bipolar, depression and PTSD, so the multiple meds can be a blessing or a pain in the butt depending on if you get the right combination. I don't really have any suggestions for you regarding the headaches I get them alot too, and just have to deal as my docs don't believe me that I am in any kind of pain.
As for Mayo, I've been thinking of going there as well. It's a huge medical center that specializes in research and development of new cures and/or treatments. There is one in Scottsdale, about 3 hours from where I live, and there are two others in the country, but I don't know where they are. Just google Mayo clinic and you'll find them. They're also tremendously expensive, so if you don't have insurance you may want to check in to how much they charge before you go further with them.
That said, welcome to the group and I hope just having support can help you feel better.
(((hugs)))
Cindy
I smile because I have no idea what's going on!
 
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MaryinMt responded:
Hi Jen welcome to the group. So sorry you are in so much pain. I hope the RA Dr can give you some help. I wish I had an answer for you but am new to this since October. I take Neurontin and Savella for my Fibro symptoms still not sure it's helping. I offer you gentle hugs and understanding. Mary
Signing off with tender hugs , caring thoughts and well wishes.
 
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MaryinMt replied to TomJust's response:
Hi Tom I was just going to ask a question about neck stretches this is great info. I have been having a lot of headaches and knew it was related to my neck but didn't know how to fix it. I will be trying these stretches. Thanks Mary
Signing off with tender hugs , caring thoughts and well wishes.
 
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NeNe_11 responded:
Your post is very interesting to me regarding the same pain I get in my right hip all the way down to the foot that is really disabling. My question to you is....does that same pain occur when you are in bed? I am awakened by this many a morning around 4am with my right foot just throbbing in pain. Ive posted about this before but you are the first who gets this.
 
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Caprice_WebMD_Staff replied to NeNe_11's response:
Hi NeNe,

This may or may not be due to Fibromyalgia. There's nothing to say we can't have more than one condition going on at the same time. See your doctor about this and pursue answers, just to be sure.
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
 
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NeNe_11 replied to Caprice_WebMD_Staff's response:
Thanks Caprice-I had an xray done & it showed nothing. My doc really had no other suggestions except PT which I have not done. It much worse with activity & calms down when I sit & recline. I too have had sciatic nerve problems(on the same side) although I have not had that flare up in years. Do you think they are related?
 
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Caprice_WebMD_Staff replied to NeNe_11's response:
I don't know if they're related. You may want to pursue a CT scan to rule out nerve impingement. Then again, even if that is the case, PT is the best option, learning how to do exercises which you can do at home.
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell


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