Chronic pain...no diagnosis

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Noinsanity76
Regular Member


Date Joined Apr 2012
Total Posts : 35
   Posted 4/6/2012 1:01 PM (GMT -6)   
Hi, I'm new. My name is Gina and I am 36 years old. I guess I came here because I am more frustrated than anything and I am curious if anyone can relate to my story at all. The doctors sure don't seem to care. This all started with an irretractable migraine that lasted for 8 months. Finally, after many ER visits and what seemed to be, unnecessary treatments. The migraine abated. However, I was and am currently left with severe neck, shoulder, hand, hip, knee and foot pain. It seems to be severe joint pain that radiates throughout my body. My MRI of the brain was clean, my cervical spine showed mild DDD with 2 slightly bulging discs. Apparently, the neuro considers this normal. In the mean time, I have developed tremor on my right side and variations of hyperflexia. 3 neuro's, none are concerned. My pain doctor says fibromyalgia or mayofacial pain syndrome, (fatigue is definitely an issue as well) I have been turned down by two rheumatologists for whatever reason, and my pain doctors office can't seem to find the time to find a rheumy that will take me. ***sigh*** The clincher to all of this is I will be relocating to a different state and will have to start all over. Does this sound familiar at all? Any advise? cry
C-PTSD, Anxiety, Depressive Bi-polar. Chronic pain with no diagnosis. Still smiling and trying to make the most of life, Ben when it gets really hard!

Post Edited (Noinsanity76) : 4/6/2012 1:14:04 PM (GMT-6)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16294
   Posted 4/6/2012 7:46 PM (GMT -6)   
Hi NoInsanity and welcome to the chronic pain forum. I am sorry that you are having such a terrible time getting the drs to listen and try to help you. I hear your frustration when reading your post. I know you said the neuro felt even with some findings on the MRI, yes they many times do consider that normal because you are not a surgical candidate. So don't let that comment upset you. The drs all say bulging disc do not cause pain, I have my own ideas on that one. Just so you know this is becoming a real problem with drs, getting them to listen to a patient.

That is really odd with the possible diagnosis of Fibro most people with it are treated by a rheumatologist. Hopefully, once you relocate you can get in to see a good rheumatologist. It is always so hard having to start all over again trying to find good drs, but so far yours seem to have bombed out on you, so perhaps a new fresh set of eyes is what you need. Are you going to be moving any time soon?

I know I have not been of help with your current situation but hopefully you will be moving soon and can get good care. Please keep us posted on how you are doing..

Take care....Susie
Moderator, Chronic Pain Forum & Psoriasis Forum

Jim1969
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Date Joined Jul 2009
Total Posts : 2042
   Posted 4/6/2012 8:21 PM (GMT -6)   
In some rural or semi-rural areas specialists are letting the family doctors handle the treatment once a fibro diagnosis is made. There simply are not enough practicing specialists in these areas to go around and many times to see one means at least a 2 hour round trip if not longer.

Have you tried any of the medications typically prescribed for fibro like Lyrica, Cymbalta or Neurontin? If not try talking to your family doctor about giving them a try. If one doesn't work then try another. While they are similar there is enough difference between them to make it worthwhile to try all of them if one or the other is not effective. Most family doctors I know are very willing to try these medications as they are not narcotics.

While those meds may not eliminate your pain they might at least reduce it. It is also possible that you have more than one issue going on, but if you can get one thing under control it should make it easier to find out what else is going on and go from there.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.
Moderator Depression Forum.

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 4/7/2012 3:16 AM (GMT -6)   
NoInsanity,

As Susie said - welcome to the board.... but sorry you are having all of these issues.

I'm about your age (I'm 38) and it took me a long time to get firm diagnoses. I know it's very frustrating to start over w/ doctors..... but, I agree that maybe a new set of eyes will be a good thing. I didn't get diagnosed until we moved to another state and found a doctor that was young and intrigued w/ my case. I'm hoping the same will happen for you. Sometimes - just finding out "what" is going on is half of the battle. Then, you can appropriately treat it.

Wishing you the best of luck w/ your move..... --Tina
Moderator - Chronic Pain Forum

My faith and family sustain me even on my worst days... as well as my wonderful friends here at HW.

Health/Pain Issues - too many to list; feel free to ask

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 4/7/2012 4:44 AM (GMT -6)   
Hello and welcome.

I agree with the others and have been through that process of bad dr's and no "real" issues. Also, when they see you have a MH diagnosis...despite the fact that one thing has nothing to do with the other....they judge you immediately. It's such a shame because the word anxiety or PTSD can stop good medical treatment providers in their tracks.

My answers (for the pituatory disorder) came from an endocrinologist I was referred to for diabetes. I actually have very low blood-sugar, but do have spikes occasionally. Nobody would work with me or listen and then my PCP referred me to this man and he figured everything out within two visits. It was amazing because nobody had ever heard of the problem I was having and he could figure it all out so quickly. The right tests showed everything very clearly.

As the others said, I hope the new set of eyes will be your answer. The stress of the move may be a trigger and may give them something more clear to look at once you get there.

Good luck!
Failed TLIF L5-S1, Miltiple Bulges/Herniations, Scoliosis, Pituatary Disorder, Fibro, Failed Bladder Surgery, Failed Nissen, GERD, OCPD, GAD, MDD, CFS, TMJ, Migraines, HBP, Idiopatic Reactive Hypoglycemia w/Diabetic reaction to HGH, Bi-lateral CTS (now trigger finger), Edema, Tarsal Tunnel Syndrome, Peripheral Neuropathy, Plantar Fascitis, Tibular Tendonitis, Adult Onset Flat Feet, & Vision Issues

Noinsanity76
Regular Member


Date Joined Apr 2012
Total Posts : 35
   Posted 4/7/2012 9:06 AM (GMT -6)   
Thank you everyone for listening. The neuro's were due to the long intractable migraine. I've been trying to get into a rheumy for at least the last 6 to 8 months, but between the pm's office and his staff, it just hasn't happened. @ Jim, yes I am current taking 1800mg of neurontin, 10mg/325mg percocet tid, robaxin 500mg bid, Prozac 20mg, Mobic 7.5 bid, and 3mg klonopin.
Definitely covered, though, it's probably time to reup the neurontin again. rolleyes My insurance doesn't want to cover lyrics or cymbalta. mad
@ retiredmom, I think the most frustrating thing is that I have PTSD and other mental health issues, so instead of helping me manage my pain I get a lot of, "it's all in your head" attitudes, even from family. I, however, dont give darn what anyone thinks about it anymore, I AM IN PAIN. Lol. If only pain could make you turn a color so that everyone could see, instead of label.
I am from Reno, Nevada and will be relocating to Spokane, Washington. Hopefully, i will find a new set of eyes there wink

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 4/7/2012 12:48 PM (GMT -6)   
Hi there, just wanted to welcome you aboard. Sorry you are suffering so much but glad you found us. Have you tried a pain management doctor to see what he has to offer you?
Not sure what else to say, sorry i am really brain dead at the moment.

But glad you came here and hope you will keep posting.

Suzane

Noinsanity76
Regular Member


Date Joined Apr 2012
Total Posts : 35
   Posted 4/8/2012 12:54 PM (GMT -6)   
Lol Suzanne. I understand, today is a really bad day. Just so much pain, and I'm foggy due to my meds. Yes the only doctor I have right now is a PM. No one else wants to deal with me. Going to make an appointment with my primary though, it seems I'm having a pretty severe flare and I don't know why.
C-PTSD, Anxiety, Depressive Bi-polar. Chronic pain with no diagnosis. Still smiling and trying to make the most of life, even when it gets really hard!

Noinsanity76
Regular Member


Date Joined Apr 2012
Total Posts : 35
   Posted 4/8/2012 12:56 PM (GMT -6)   
P.S. the darn PM is moving to a new office so I am pretty messed up!
C-PTSD, Anxiety, Depressive Bi-polar. Chronic pain with no diagnosis. Still smiling and trying to make the most of life, even when it gets really hard!
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