I am new to this board. Been around the PN board. Officially I do not have a diagnosis. I have had all over body burning pain with parasthesias for four months. I've see serveral neurologists who cannot diagnose me. I've recently been referred to a chronic pain Dr. but of course waitng to be seen in a few months. I am taking Lyrica 75 mg 3 times a day but it is not working anymore. I have had to increase it every few days now last couple of weeks.

Its very difficult living with undiagnosed pain. If I knew what was causing it I would be able to cope better. Any advise appreciated.

Hi ~ I assume you haven't had any back injuries, or any neck injuries like whiplash?? Have you taken any falls?? Have you perhaps fallen on your tailbone? Were you rear-ended in a car wreck?

I'm just picking at straws here, trying to think of something that might cause the pain, but I'm sure everyone has thought of that already.

I herniated one disc just by bending over to pick up an empty laundry basket. The next disc herniated while I was a PASSENGER in a car, riding on vacation -- when we got to our destiny, I could barely walk and I had to spend most of the vacation IN BED. Boy, what fun.
Being that it was before the internet, I was stupid and let them do 2 open surgeries on me --- and now I'm disabled from it.

Anyway all I wanted to say what it doesn't take much to herniate a disc -- if they want to blow, they'll blow!!!

Any information you can give us would help. God bless. Hugs, Lee

Hi rose_thorn98,

When you say, "all over body," do you mean different places all over your body at different times, or everyplace all over your body all the time, or what?

Someone (I think Mrs. D) recently posted a link to a chart (which I cannot find, of course) that showed specific areas of the body related to specific areas of the nerves coming out of the spine. If that correlates at all to what you're experiencing, it may be something you can take to your neurologist as a possible clue (likewise "picking at straws here").

Doc

Hey Dr. Smith ~ Good to "see" you here - although I'm sorry you NEED to be here.

So how are you? I wish they'd place the Lost in Space series on my cable. I haven't seen that in 30 years. i enjoyed it.

Just wanted to say "hi" --- Take care. Hugs, Lee

Hi Leesa,

I'm sorry any of us have to be on any of these boards!

But better places like this than trying to go it alone...

Google says episodes of LOST IN SPACE can be found on Hulu.com

Backatya,

Doc

why not blame it on Fibromyalgia ?? Thats what the drs do.

Amazingly they don't call it Fibromyalgia. They say it doesn't have a name yet, what ever I have, but they do have other patients who also have same symptoms as me.

All over body at the same time, all the time, 24/7 for 4 1/2 months. Began suddenly and progressed quickly. No spine issues, or injuries. 3 MRI's of brain and spine all normal. Feels like small fiber neuropathy, but since I have no LOSS of sensation Dr.'s won't call it small fiber neuropathy. Only test that showed any thing was a within normal range, but low normal, of Epidermal Sweat Gland Density, which according to the lab, may indicate a SFN.

I'm a 39 year old male. I was very active prior to the chronic pain. I'm at my wits end. My anxiety and depression are at their worst. I'm now in psychotherapy, but I don't think one hour a week of talking about how my pain is degrading my mental capacity is helping me. I'm not criticizing all therapy; it's just not helping me with pain. I need to find a way to stop the pain or I fear that I will simply give up on everything.

My pain is in my right buttock daily, and often travels down into my right hamstring. After golfing 18 holes, my pain will manifest itself in my groin for up the three days.

I wake up every day at a 2/3 on the pain scale. Sitting in an office chair or in a car cause my pain to rapidly increase from a 2/3 to an 8/9. When I say rapidly I mean 10 to 30 minutes. My right butt muscles spasm randomly every day from one spasm episode to multiple episodes lasting anywhere from 1 to 10 seconds. The spasms do not trigger painful sensations. I take Baclofen to stop the spasms but the pain is not relieved.

My relentless journey to find the reason and cure for this pain includes:

Imaging
Over the last 4 years I’ve had several MRIs (with and without contrast) of my lower back, right hip and hemi-pelvis, x-rays of lumbar spine, ultrasound of ischial bursa area, and whole body bone scans. The MRIs show:

L4-L5: minimal posterolateral disk bulges are identified bilaterally. There are no focal significant disk herniations or evidence of central canal stenosis. There is mild narrowing of the neural foramina bilaterally.

L5-S1: There is a small broad-based posterior central disk protrusion at this level. There is no evidence for compromise of central canal or nerve roots. There is no significant foraminal narrowing.

Treatments

Over the last 4 years I’ve tried the following treatments, and have summarized each treatment’s effectiveness.

Cold and Heat Therapy: Doesn’t relieve the pain.

Piriformis Stretching and Neural Flossing: Provides immediate relief, but only temporarily.

Core muscle strengthening: Doesn’t relieve the pain.

Psoas muscle release: Doesn’t relieve the pain.

Piriformis muscle release: Provides immediate relief, but only temporarily.

About 3 months of weekly Physical Therapy: Doesn’t relieve the pain.

TENS unit: Delays the onset of the pain, but causing skin irritation and discomfort.

Sitting on a 70cm exercise ball versus office chair: Doesn’t relieve the pain.

Sitting on a FitBall disk on top of office chair: Doesn’t relieve the pain.

Sitting on pillow on top of office chair: Doesn’t relieve the pain.

About 3 years of weekly Chiropractic manipulation: Doesn’t relieve the pain. I did learn that I had fallen arches, specifically on the same side as the pain. I have ortho inserts and wear them daily now.

Acupuncture (3 visits): Doesn’t relieve the pain.

CT-guided Epidural steroid injections in L4, L5, S1: First injection relieved the pain for 6 months, second injection relieved the pain for 3 months and third injection relieved the pain for 2 weeks.

CT-guided Ischial bursa injection: Doesn’t relieve the pain.

CT-guided Piriformis injections (steroid and Botox): First steroid injection relieved the pain for a couple of months; second steroid injection relieved the pain for 2 weeks. Botox injection doesn’t relieve the pain.

RF Ablations of T-11 through L3 twice with 3 month periods (Sept 5 and Dec 2, 2011), Doesn’t relieve the pain.

Pain Management

Ibuprofen/Aleve/Tylenol: Doesn’t relieve the pain. Took Ibuprofen almost every day for 1 year and ended up with Gastritis. I stopped taking NSAIDs. I cured my Gastritis by drinking Aloe Vera Gel over a 3-week period.

Darvocet 10MG: Decreased the pain by 1-2 points for 30 to 60 minutes.

Hydrocodone/APAP 10MG: Decreased the pain by 2-3 points for 30 to 60 minutes.

Oxycodone/APAP 10MG: Decreases the pain by 4-5 points for 1 to 1.5 hours.

Lyrica: No pain relief.

Gabapentin: Couldn't tolerate.

Topirimate: Only been taking it for one month. Haven’t noticed any pain relief from it.

Lidoderm Patch: Just started wearing these five days ago. Doesn't relieve the pain when sitting, however, when I wear the patch and don’t sit upright I feel great.

Baclofen: Stops the buttock muscle spasms but doesn’t relieve the pain.

Lidocaine: Had 10cc injected about ½ inch below the skin above the center of the Piriformis (my wife is in the medical field) and all of my pain went away for about 45 minutes. I even went for a long drive after making sure my leg wasn’t numb and no pain was triggered.

I’m now thinking of having Piriformis Release Surgery. I live in Milwaukee, WI. Does anyone have any advice for my after reading my story? My anxiety and depression are winning the battle at the moment. It’s affecting my work and my family life. I’m losing myself. I’m not suicidal because I have kids that need and deserve their father, but if it wasn’t for them there would be no reason to continue this suffering.

Sincerely,

Matthew

Attached Files

PS Scans.zip (205.4 KB, 115 views)

Dear Matthew,
I am so sorry you are suffering. I have a great deal of empathy for those with back pain as that has been my issue as well. I don't know how many physicians you have seen, but by the number of different treatments you have endured, I would say quite a few. I hope you have a pain specialist that will offer you more than what you currently are on, or have tried. From the sound of it you have not really recieved a concrete diagnosis. I am not familiar with piriformis syndrome. For sure, you need to find out exactly what is wrong. If all has failed in the direction you have gone, I would suggest Mayo clinic. You have all your records. When my pain became so bad that I didn't want to be here anymore, I was given morphine. My condition as is yours, warrents strong medication for you to have any quality of life. I would at this point ask your pain specialist if he would try this medicine. It saved my sanity, until I could get to the point of a second spinal fusion. If it has not been offered to you, I would ask at this point. Mayo clinic can get to the bottom of most diagnosis. Of course I hope others will chime in and offer you some more alternatives to those locations. You need the very best, so that you again can have quality of life. Your post said that you didn't have much of a life as it is now. That is not acceptable and I hope you go for more help and don't give up. Maybe find out about piriformis syndrome and find a specialst in that field.
You can't give up. Your family needs you. Do seek more help for the pain, and go across the country if you have to, to find an answer. Nobody should have to suffer that much. I do not know what state you are in, but if you post that, and your location, there may be others who can name a specialist that might be able to give you a diaganosis and a better outcome than you have now. I know very well, the depression that comes with severe pain. I had been told there wasn't anything more they could do for me, and I endured for six years of __ll. Then I plowed ahead and sought out another neurologist, that had one of the best recommendations in my state. Please keep going forward to find the answers you need to have a good life. My out come eventually required alot more surgery,. It was worth what I had to go through to get to the point that I have now. I wanted to give up too at one point. I hope alot of others will respond to you and add anything they can to try and help you. You will be in my thoughts and prayers. Don't be afraid to ask for a really stong medicine since so many other things have failed. ginnie