Need help diagnosing unexplained chronic pain in early 30s

[soupcxan]

Generally, my feeling is that ice packs reduce the pain, and heat either has no effect or makes it worse (inconsistent).

A couple of doctors bent my legs certain ways and said, no, not piriformis. When all this started, it definitely sounded like piriformis because it was usually so tender to the touch and usually only on one side. Now it is not tender, just this awful pain/discomfort feeling across both sides.

I can do all the piriformis stretches I find on google without difficulty or pain, but they don't seem to do anything for me.

I went to one massage therapist and that was quite painful due to the amount of pressure he used and the directions of the stretches.

Unfortunately I can't stop driving for 6 weeks - but I do know when I went on vacation for a week last year, I did no driving at all for 7 days and did a ton of walking, and still had the pain.

I guess I will keep the SI joint injection I have scheduled and see what happens. I can always go back for a piriformis injection (fun).

 

[TromboneAl]

That sure is a bummer.

Here is a story that may be relevant to your massage experience. Lena had a Swedish friend named Ingela who was a masseuse. I had some pain from playing the trombone, and she said " This will help," and dug a knuckle into a spot in my back. It was incredibly painful, and I essentially said "Get that woman away from me and don't let her near me again.". To this day we refer to that spot in my back as the "Ingela spot."

Later I went to a specialist, and he recommended that same knuckle thing, and explained that it was that painful because it was targeting the site if the inflammation. In other words, that pain indicated that it was what was needed.

 

[FreeAtLast]

I had sciatica when I was in my 20's (now 59) and the pain was similar to what you describe. This went on for almost a year going to my doctor and trying anti-inflammatories, creams and some core exercises. I even got desperate and got a water bed hoping I could get comfortable. Heating pads, warm baths/hot tub seemed to provide the most relief.

I then purchased a new car which had very good seats and I notices that things started getting a bit better.

I started to review my lifestyle and I realized that I had changed jobs and the chair that in my new office was not very good. I got a different chair and things got even better.
I then realized that I was carrying my wallet in my back pocket and I made that change.
Now things were starting to get back to normal.

I also got rid of a old recliner that I had at home which was a bit too worn in.

 

[soupcxan]

I need to look into the Mayo Clinic option more seriously. Are there any differences between their locations? The one in Arizona is probably closest me.

 

[citrine]

Have you tried a Massage Therapist who does Neuromuscular Therapy? It sounds like the entire glute needs to be worked out, especially trigger points in glute min and glute med. that can radiate all the way up to the shoulder and all the way down the leg, sometimes mimicking sciatica. You can try two associations to find a therapist near you who has the NMT training, AMTA or ABMP. This will take anywhere from 3-5 sessions to feel better.

 

[soupcxan]

Well that's great - the Mayo clinic doesn't think there's anything they can do & won't see me. I guess they are not interested in a healthy person who gets cronic pain at 30 with no cause, diagnosis, or treatment, and gets to look forward to the next +30 years of being in pain every day.

 

[soupcxan]

Bumping this thread - finally got an appointment at Mayo in a few weeks.

Had an injection of steroids/anesthetic into my piriformis on one side but so far have not noticed any difference. The area is not painful to touch nor is it painful to the range of motions that the doctors have tested me on.

Also had a lumbar MRI while sitting (rather than laying down). I could feel the tingling during the scan but no disc problems were observed, so must non-discogenic.

The sensation I am getting now is more like pins and needles (like when your foot goes to sleep), aka paresthesia, across my butt and down my legs. It is very diffuse. Worse when sitting for a long time. Better when exercising (walking/jogging or weights). Better when sitting on ice packs. Until recently, it would go away if I lay on my back, but now that doesn't seem to work, which is a problem for sleeping. The most effective painkiller I've found for it is tramadol.

Interested in any other ideas you may have no matter how random they may seem. Neurological? Vascular? Rheumatological/allergies?

 

[TromboneAl]

Perhaps if you can map the tingly feeling, it might help them diagnose it when you have your appointment.

 

[Live And Learn]

Bumping this thread as I've been thinking about you and am wondering if there has been a diagnosis. Fingers crossed for a solution !

 

[Raygun99]

I too have been experiencing the EXACT symptoms over pat 18 months. have tried just about the same things. Neurologist, Back.Pain Specialist, Chiropractor, ...last suggestion was injections, but have not tried yet. Everyone continues to say it is Periformis Syndrome but no clear answer. Going to a second Neurologist in Aug at th University Hospital... Running out of answers too.. I will keep following. I FYI. My original symptoms started after prolonged sitting at desk and automobile..

 

[spncity]

What about acupuncture? You'd have to do it more than once - seems to work cumulatively sometimes.

 

[soupcxan]

Still no answers. Lots of x-rays, MRIs, and EMGs but no clear cause. My gut says there is a muscle or bone that is pinching the sciatic nerve when I sit. My gut says there is a trapped nerve that needs to be surgically decompressed. I think part of the problem is that it is outside the spine and 95% of doctors only deal with the spine. Currently trying a higher dose of neurontin and going for a couple of facet joint injections in a couple weeks.

The upper back pain seems to be more muscular. Not sure why they would start spasming as I do plenty of stretches and exercises across the whole core. Will get some trigger point injections for the upper back at the same time as the facet joints.

Acupuncture and such are still on my list but since that is purely pain management, not the top priority.

 

[Raygun99]

Soup. Good luck. I find it amazing that so few similar scenarios are found in the WWW searches. I guess that is why the Drs are so puzzled. Seems like these symptoms all get thrown into Fibromyalgia, Piriformis Syndrome etc. My last visit to the Rheumatologist to rule out Sjogrens Syndrome..often exhibited with dry yes and low water retention. We seem to be on parallel paths. maybe one will hit on something. Also of note.. In the past three months I have also started to get sever burning in my pinkey toe and top of foot with any shoes I wear. (All of my blood test show ok for diabetes) Last I do take status but stopped for six months with no diff on the pain ..and cholesterol went up. Keep us posted..I will too

 

[Live And Learn]

I assume the doctors have ruled out MS ? Have a friend who's only symptom was "pins and needles" in her calf on one leg.

 

[psweath]

I went to a local hospital presentation recently on PAD (Peripheral Artery Disease) - a common circulatory problem due to narrowed arteries somewhere other than your heart (it it's your heart, it's CAD (Coronary Artery Disease). Anyway, the symptoms you are describing were listed on one of the slides (specific to butt pain). Might be worth asking about to rule it out. Best of luck.

 

[Buckeye]

Sounds like some of the issues my best friend had for about 5 years. Finally, one of the doctors looked at her hip. Ooops! Time for a replacement. As it turns out, there was nothing wrong with her back (discs, sciatic nerve). I can't even imagine how much money she and her insurance company spent over the years trying to figure out what was going on.

All the pain was generated by a deteriorating hip. I guess they never thought to look because she is in her early fifties which meant that the hip started causing pain in her late forties.

 

[Raygun99]

Soup: Its been a while since I have seen any update on your quest. I have still been looking too for a final resolution. A couple of things I have recently tried and another thought. So far everyone points to Piriformis Syndrome..and treatments to address that problem.
A) Saw Cardiologist and ruled out blood flow issues
B) Saw Rheumatologist to rule out Sjogrens , and other joint related items
C) Original MRIs still considered no back - spine issue.
1) 12 Chiropractic Visits.. Low to no benefit
2) Vitamin B Shots.. My blood work showed low.. 2 months.. no relief
3) Recent physical (1 week ago indicated very low testosterone--Dr indicated it was not the cause but did start a 90 day trial of injections) All caveats and risks explained 1st. Note after 1 day I personally feel way better but the pain persists.. We are hoping muscle strength may help.. More time in the gym for me too..
3) I have an appointment with the university hospital end of Aug..(Takes 8 weeks ) I hope to re-visit the entire process so far and maybe get another opinion.

LAST: Something I still need to pursue. There is another symptom very similar called WEAVERS BOTTOM Have you explored this possibility.. --http://www.medterms.com/script/main/art.asp?articlekey=17110

 

[soupcxan]

No forward progress, I have found the pain is bothering me more while I sleep now which is really scary as until recently I at least had that as one place I could get away from it. It's a very intense, sharp pain right at my spine between my shoulder blades (exact location varies). Crazy bad.

The sitting pain persists as well. Lately I have been thinking that it could be the SI joint even though the first shot was not super-effective. May try another one for lack of good options.

Hips should not be going bad at 30 and problems should've shown up on MRI and x-ray.

I have asked about MS but no signs of it on MRIs.

Anything is possible but Sjogren's symptoms are not ringing any bells.

I am getting tired of hearing doctors say that they have bascially done all they can do - everything looks normal. I do not think they believe me when I tell them that I am not going to make it another 5 years like this.

 

[bbbamI]

I'm so sorry to hear you're in such pain and a reason can not be found. I know what it's like to have chronic pain. Fortunately, I no longer suffer.

If you have not done so, please look into seeing a Pain Management Specialist. Mine was wonderful...I highly recommend it.

 

[Buckeye]

I feel so sorry for you and I hope you can get to the bottom of your problem. I had blinding back pain for a year so I know what pain does to your quality of life. Not fun.

A girlfriend of mine had been having pelvic pain for the past 8 years. There was pain, tightness and tugging in her abdominal area. She tried every kind of doctor and therapy. Often she felt they felt it was all in her head. She was prescribed a lot of meds.

She heard a dermatologist on a local radio show and made an appointment to see him. He found something immediately. She had had a tummy tuck after her hysterectomy 8 years ago and the anchors and "fishing line" her surgeon installed was not appreciated by her body and was apparently too tight thus the pain, tightness, and tugging feeling in her abdomen. He told her he couldn't guarantee removing the hardware would solve her problems but we were pretty sure this was going to do it.

Her surgery was Friday and it was a total success. All the pain, tightness and feeling of tugging was gone! I've only talked to her on the phone but the joy in her voice was amazing. Eight years of searching and she finally has a resolution!

 

[Moemg]

Sorry you still have this problem.I agree with the recommendation of a pain physician .