please help, desparate

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boo32
Regular Member


Date Joined Jun 2009
Total Posts : 222
   Posted 1/2/2010 10:21 AM (GMT -7)   
hi all,
after a few very shaky months i've made it back to the land of the living. I nearly lost the plot and gave away my sanity but like everything in life it passes.
I can't type much anymore, never could to begin with but just wanted to ask a quick questio if that's ok.
I have the usual sore stiff muscles all the time but over the last 18 months i have developed a very nreve like burning pain down my neck and shoulder only ever on the right side. I just cant live with the pain of it and have completely given up on the medical profession and don't have the finances for alternatives and weekly massage which did helps greatly.
It runs from the bass of my skull, down oveer my shoulder and right to the tips of my right fingers. My collar bone and shoulder blade are also very tender to touch but also feel like theres acid running through them.
Is this consistant with FM. It is greatly aggravated by computer use and after just this typing i can barely raise my head.
Any help appreciated......i'm at my wits end. Thanks. Fibro is considered a mental condition by most doctors where i live....Ireland. The few that do recognise it as a physical condition just tell me there's nothing that can be done only to accept it and get on with things.
BikeBoo, biking with my boo since 1999
Of all the things i've lost, i miss my mind the most! But it has its advantages!
Fibro, spinal arthritis and all that goes with it.
GAD


confused Okie
Regular Member


Date Joined Apr 2009
Total Posts : 164
   Posted 1/2/2010 10:29 AM (GMT -7)   
I see in your signature that you have spinal arthritis, is it AS? The burning sounds like a nerve in your neck and the spinal arthritis would cause that. Are you on any NSAIDs, DMARDs or TNFs for it? If it is the artritis then the inflammation needs to be controlled, also a pain management dr could do injections to help with it. There are spinal nerve maps online that show where the nerves run, that might help you determine the cause. I have the spinal artritis with the fibro also and it can get real bad at times. You might consider a medrol pack also, very cheap and it knocks mine down when I go into a flare. Hope you feel better soon......





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If you think you can, you can. If you think you can't, you won't.
I may not do things like other people, but I get things done in my own way, in my own time.


dogshowlover
New Member


Date Joined Aug 2009
Total Posts : 9
   Posted 1/2/2010 10:38 AM (GMT -7)   
Have you been tested for lyme disease by a Lyme Literate Doctor??  Fibro is often misdiagnosed.
 
Linda

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17098
   Posted 1/2/2010 11:58 AM (GMT -7)   
Boo, burning pain does occur with many of us with fibro.  I'm not a doctor but my guess is it is a pinched nerve along with your arthritis...just what confused Okie thinks.  You can reach the base of your skull and your neck so why don't you try gently massaging these areas yourself.  It's better than doing nothing.  I massage my neck and the back and base of my skull.  My muscles are very tight there. 
 
For the burning pain, have you tried heat or ice?  If one doesn't work any better than the other, I would use ice.  I had very bad back problems several years ago and the chiropractor had me using ice packs and it really did help.  The ice will help any swelling go down and, if there is swelling, it could be helping to pinch your nerve. 
 
I use ibuprofen with food to help with my pain (600 mg every six hours) and I alternate it with extra strength Tylenol (1,000 mg every six hours) when I'm in a flare.  I also use malic acid magnesium supplements and vitamin D3 to help with pain and fatigue. 
 
I wish I could be of more help.  This sounds terrible but I do hope one of these suggestions will give you some relief.  Let us know how you are doing because we really do care!
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


boo32
Regular Member


Date Joined Jun 2009
Total Posts : 222
   Posted 1/3/2010 2:26 AM (GMT -7)   
hi guys,
thanks forr the advice, i mentioned lymes to the doctor but he dismissed it. It's mild osteo arthritis i have in my lower spine and despite asking for an mri of my upper back i can't get refered, you need a referal over here. I even have insurance to cover big stuff like that.
I take nsaids but don't find they help much. The best thing of all is a hot bath with magnesium salts and arnica oil.
Do you know what the recommended doasage for magnesium is, the bottle i have is only 250mg a tablet, i see some people take over 1000mg, i'm sure it would help also.
take care all and thanks again.
boo


BikeBoo, biking with my boo since 1999
Of all the things i've lost, i miss my mind the most! But it has its advantages!
Fibro, spinal arthritis and all that goes with it.
GAD

Post Edited (boo32) : 1/3/2010 5:59:48 AM (GMT-7)


dogshowlover
New Member


Date Joined Aug 2009
Total Posts : 9
   Posted 1/3/2010 8:37 AM (GMT -7)   

It's sad that your doctor won't even entertain the idea it could be lymes.  If you go to the website www.cpnhelp.org and key in arthritis in the search field you will  see that there is a doctor treating people who have arthritis with antibiotics.  He is having remarkable results! 

I'm having trouble in my state finding a doctor who will treat me with IV antibiotics which I need because of the advanced state of lyme disease I have.  So I a going to move to a nearby state to get the treatment.  It is not legal in every state to treat with long term IV antibiotics so I am going to have to move.  I will do whatever I need to do to get well.

 

 

 


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40584
   Posted 1/3/2010 9:15 AM (GMT -7)   
Boo,

I just wanted to say that I hope that you feel better soon. I don't know if heat would help in your situation, I use what is called a bed buddy. It is a tube filled with rice that you put in the microwave, wrap with a towel and put around your neck. I see somebody mentioned Ice so maybe that is the way to go in your situation. I just hope that you feel better soon. It sounds very much like nerve pain.

Take care, one day at a time my friend.

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


kathydownunder
Regular Member


Date Joined May 2009
Total Posts : 447
   Posted 1/3/2010 10:19 AM (GMT -7)   
Boo,
i just want to let you know I understand what you are feeling for years I have suffered form the same thing. No pain killers help and I also suffer from migraine that can be brought on by this pain. For me the only thing that helps is laying on a rolled up towel. I sleep on one and IF i am away from home I use one behind my neck as much as possible.
As for the other things suggested none of them apply with me it is just one of the joys of FMS, or so the Doctors tell me.
As for suppliment they have no effect on me at all and I have tried the lot, by all means see if they work for you I have a friend here in Australia who had wonderful relief with them.


Kathy

FMS, CFS,IBS,TMJ, Migraine

boo32
Regular Member


Date Joined Jun 2009
Total Posts : 222
   Posted 1/4/2010 3:41 AM (GMT -7)   
hi guys,
Thanks to you i can save my money by not going to the doctor and knowing that there is people out there who know exactly waht it feels like to be in pain and then so poorly understood.
We're years behing you in terms of medicine, only 30 miles across the pond the UK are further a field than us.
My friend who recently was diagnosed with a deep brain tumour was told this is life as you know it now, forget everything and just claim disability, if it bleeds again you may die tommorow or not for another 50 years. The poor guy is only 29 with two kids under 3 and a very worried wife.
So in the greater scheme of things i know i'm not that badly off, but you still have to find a way to manage your lot. Frustration with the medical profession is something i need to let go of and you guys are helping with that, so thanks a lot.
Take care all, boo
BikeBoo, biking with my boo since 1999
Of all the things i've lost, i miss my mind the most! But it has its advantages!
Fibro, spinal arthritis and all that goes with it.
GAD

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