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kira

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Joined
Feb 4, 2014
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2
Reason
DX FIBRO
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00/0000
Country
US
State
OR
I am 28 years old and have had chronic pain for almost 10 years. It started with severe back pain right under the bottom of my right shoulder blade. Doctor after doctor just tell me they don't know what to tell me. I eventually just gave up on them. I've been to MD's, DO's, Chirpractors, Massage Therapists, Physical Therapists, Naturopaths...

I finally managed to get my back out of spasm after downloading The Trigger Point Therapy Workbook, but almost immediately, I could feel pain everywhere in my body. It's almost like the pain in my shoulder blade was so bad it was overriding everything else. For the last few years I have been trying to deal with hurting every single minute of every single day.

  • I have muscle pain everywhere and I find multiple little knots [trigger points] in every muscle group of my body.
  • Pain varies from throbbing/aching, stabbing, to, at times, my entire thigh feeling like it is sunburned.
  • My wrists hurt to the point I can't even support my own body weight on them.
  • My ankles are stiff and always wanting to pop, along with my hips, knees, and wrists.
  • I wake up from sleep in pain and never feel like I sleep enough. Half the time I'm aware I'm sleeping, but I am also aware of everything else going on around me. I never have energy, and some days I will literally sleep all day.
  • Sitting for long periods really aggravates my pain.
  • Florescent lights are my absolute arch-nemesis [hurts my eyes, my brain starts getting foggy and I can't focus, I start seeing stars, then I get a migraine]. I wear sunglasses and a hat at work to try to block the lights out because the company refuses to replace the blue-spectrum flourescents.
  • Cold weather aggravates the pain. Ironic since I'm from Portland and it's cold/rainy 9 months of the year.
  • I am constantly poking at myself, laying/leaning on tennis balls, stretching/doing yoga
  • I don't sit on furniture when at home. I prefer laying on the floor where I can lay on a tennis ball or stretch out.

Doctors just don't know what to do. They tell me 'I'm sorry you're in pain' then tell me to talk to a therapist, or brush it off like I'm making it up. Other people just tell me I am being a baby or it's all in my head.

I feel like I'm lost on what to do next. I have no diagnosis and most doctors don't seem to want to do anything. Does anyone have any advice?
 
Hi Kira sorry to hear your pain started at such a young age. Your list of complaints could be mine if you added 2 back surgeries. Unfortunately it sounds like you have fybromyalgia, you will need to find a good rheumatologist, preferably a younger one, they seem to be more sympathetic to fibromyalgia. For me right now the trigger points are the worst, I've been in physical therapy for more than a year now and all I ever get is temporary relief, if any. One spot relaxes, two more pop up. That seems to be the big part of fibro, that for me, no one seems to have a clue. Everything I tell a doctor the trigger points are the cause of what ever my current ache is, they basically tell me I don't have a medical degree and can't possibly know what I'm talking about. I'm 54 and I'm reasonably sure I've had fibromyalgia way before it had a name. Keep looking for a doctor until you find one that listens and has at least some understanding of this debilitating disease, have a good support group of friends and family, if possible and keep doing your own research.
My mantra everyday is. 'Today I chose laughter' because I'm really tired of crying
 
Thank you debw.

I do make a huge effort to stay positive; there is nothing worse than feeling bad physically AND mentally. Finding The Trigger Point Therapy workbook was the best thing that ever happened to me, though, like you, I only get temporary relief and when I get rid of one trigger point, I get two more in a different place. It's impossible to keep up! I carry a tennis ball with me everywhere I go. People think I'm crazy, but at this point I don't care. Whatever helps ease the pain..

I'm going to look into seeing a rheumatologist as you suggested.
 
I began having the same kind of symptoms about 5 years now, but it maybe started a lot longer than that with the serious back pain but I just put it down to my earlier years of playing cricket among other sports. My back is one thing but it has progressed into my right wrist and both my knees ache after I finished bulding my kitchen roof.

I also have the same problems with sleep; sometimes I can have 6 hours and feel great, but more often than not I coud sleep 10 hours and wake up feeling that I was slapped around in my sleep. I haven't heard of The Trigger Point Therapy Workbook so thanks for that, I will look into it.
 
Fibromyalgia is tricky... What symptoms 1 person has, another person may not have. It's also really hard to find a good doctor who wants to work with you to treat your pain. I should know because I've had fibro for about 12 years now and mine is very debilitating unfortunately.
 
Hi do you ever try the massage that plugs in the wall that's what I use in my chair and the spasms will slow down somewhat so I can sit in my chair longer before I work part time in my home, and its aggravating to sit longer than two hours. Sometimes ice will help , medicine just puts you to sleep .
 
Hi Kira! So sorry to hear you are always in pain, and I'm even more sorry you had to start dealing with this at such a early age! I'm I'm almost your age (27) and I know how hopeless this situation can feel at times. It's very clear to me you haven't come across a decent rheumatologist or neurologist, because is more than obvious you do suffer from fibro! You really need to find a good rheumatologist that will listen to you, one who knows about fibro, sadly that's not very easy. You will have to keep searching.

Don't feel discouraged, once you find the right doctor you might start seeing improvements, but please remember some meds works better than other on certain individuals, so you will have to find what works for you the old way: trial and error. Hang in there and please keep us posted!
 
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