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New here, no diagnosis, looking for imput

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Old 08-09-2009, 11:11 AM   #1
Join Date: Aug 2009
Location: Middlebury, VT
Posts: 3
f4sta HB User
New here, no diagnosis, looking for imput

Hi, I am new to this site. I posted the same info on the fibromyalgia boards but didn't get much response there and they thought my symptoms didn't match all that well, so I thought I would post it here as well.

I am 29 yr old female who has been suffering from muscle pain, muscle spasms, muscle twitching, nerve like shooting pain and fatigue for 3-4 years. Pain originated with spasming rhomboid muscle in back and has snowballed from there, approx. 1.5 years after original upper back spasm I started having pain, muscle fasiculation, twitching, tingling and numbness at random in my limbs, and trunk, and especially in the quads, glutes, calfs and upper arm muscles. It comes and goes and at its worst included electrical like shooting pains in my head and legs. I have done been to many doctors including a neurologist, had a MRI of my neck, x-rays of cervical, thoratic and cervical spine, nerve conduction and eeg tests (all came back negative), neurology consult and rheumatology consult did not yield any information. I have negative test results for Lyme disease, celeac disease, inflammation, thyroid problems, and Sjorgen's. I have tried massage therapy, physical therapy, chiropractic, acupuncture, nutritional supplements, more physical therapy and alternative chiropractic have all had some positive improvement but for only a limited time and then symptoms regress. Currently the muscle spasming and pain is mainly confined to the left uppper back and neck area and down to the underarm area and bottom of the shoulder blade with pain referring down the left arm. I still have some involuntary movement (which comes on randomly and lasts a few seconds at a time) in my glutes, hamstring, quads, triceps, and abdomen and side of ribs(more frequent on left side but also occassionally occurs on right side). My doctor and I feel that I have many of the fibromyalgia tender points and I notice that when my pain is really bad my muscles will feel like they are burning (mostly in arms above elbow and legs above the knee), I also have IBS like symptoms, gastro consult did not yield any known cause.

Looking for anyone who may have similar symptoms or some idea of what this could be. Thanks!

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Old 08-11-2009, 02:50 PM   #2
Join Date: Jul 2009
Location: colorado
Posts: 5
RSF1956 HB User
Re: New here, no diagnosis, looking for imput

Im sorry I don't have any answers for you. My daughter has pain in her lower back and thighs/hips only. She does have the traveling numb spots though. Have they looked at the spine and brain to rule out MS. That's one of the first things doctors looked for in her. I belong to a support group for colon cancer and am used to receiving many replies within hours of posting. This board seems much less active than that. Good Luck.

Old 11-05-2009, 02:43 AM   #3
Join Date: Nov 2009
Location: Winnipeg, Canada
Posts: 28
Keith2468 HB User
Re: New here, no diagnosis, looking for imput

It doesn't sound like polymyositis, dermatomyositis or inclusion body myositis, and those are the only 3 myopathies I have read much about. PM, DM and IBM don't normally involve muscle spasms or intense pain.

There are other myopathies though.

Last edited by Keith2468; 11-05-2009 at 02:45 AM.

Old 03-22-2010, 05:44 AM   #4
Join Date: Jan 2010
Location: Ponca City, OK
Posts: 52
johnstonx5 HB User
Re: New here, no diagnosis, looking for imput

I have the same thing. I also have other symptoms and have been diagnosed with lupus. Have you checked out the criteria for lupus to see if you have any other symptoms that fit?

Old 04-02-2010, 08:11 AM   #5
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Join Date: Oct 2008
Location: Connecticut
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BelleoftheSouth HB UserBelleoftheSouth HB UserBelleoftheSouth HB UserBelleoftheSouth HB UserBelleoftheSouth HB UserBelleoftheSouth HB UserBelleoftheSouth HB User
Re: New here, no diagnosis, looking for imput

Has your daughter been tested for scoliosis?...I have low back scoliosis with degenerative disease and my back-hips-legs hurt all the time. I wear pain patches and take pain killers.

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