Need help diagnosing unexplained chronic pain in early 30s

[soupcxan]

I am a white male in my early 30s, 6”, 145 lbs. I have always been healthy before this. No car accidents, no previous injuries. In the last year I have developed this awful pain in my butt, it is diffuse across my glutes but is not tender to the touch. When it started it was more noticeable when I sat down but now it is with me every day regardless of whether I sit or stand. It is not like any pain sensation I’ve had before (it’s doesn’t feel like a sore muscle or a bruise) and while it fluctuates throughout the day, it is extremely uncomfortable. Sometimes I have what feels like a muscle cramp / knot higher up in my back at shoulder level. It doesn't matter if I do strenouous exercises or be completely sedentary. It has gotten to the point where it really interferes with my work and my personal life. If I cannot find a way to deal with this, I really don’t know how the rest of my life is going to play out.

No one has been able to give me any answers. Even the pain meds are only 50% effective at dealing with the pain, and they make it extremely hard for me to concentrate. I don’t think my HMO will pay for me to go to the Mayo clinic but I am getting ready to just pay for it myself. Here is what I have been through:

I went to my primary care doctor, who gave me a steroid shot and an oral course of steroids. She did a set of back and hip x-rays which were clean. I went to an orthopedic surgeon who thought it was a slipped disc and sent me to a physical therapist who gave me stretches to do. I had a lumbar MRI which was completely clean. I went to a pain management doctor who gave me two epidural steroid shots in my lumbar spine. I had a bad lumbar puncture which led to a brain MRI which was completely clean. I went to a chiropractor. I went to a neurologist who did a nerve conduction study (clean) and blood work (clean). He did a hip MRI which was clean. I went to a 2nd physical therapist who prescribed core strengthening exercises. I went to a rheumatologist who did a bunch of bloodwork which all came back clean. I went to a physical medicine doctor who has scheduled an SI joint steroid injection for later this month.


In addition to all that, I have tried the following medications:

- anti-inflammatories: naproxen, ibuprofen, celebrex, diclofenac, meloxicam
- nerve pain: neurontin, lyrica
- muscle relaxers: cyclobenzaprine, metaxalone
- general pain: cymbalta, ultram, hydrocodone
- misc: requip

I don’t even know what is wrong with me. I don’t even know what type of doctor I should be seeing. How do you get medical help with difficult diagnoses? I am not a whiner or complainer but I am in severe pain just about every day - this is ruining my life.

 

[omni550]

Question: Do you carry your wallet in a back pocket? I've read about many men who had pain issues due to sitting on their wallets all day.

HTH,
omni

 

[ERD50]

I'm sorry to hear this. One thing I've read from many sources, and seems to make sense, is that x-rays and MRIs won't always tell the full story. Apparently, doctors can look at a scan, and would think the patient was in terrible shape, when they report no problem at all. Conversely, the scan may look fine, but the patient has problems. It just isn't always a visible thing.


You might try looking for a 'McKenzie Method' practitioner. Many people have reported success, I've read some studies that say they are about as good, maybe slightly better than other methods. But if it worked for you, the averages don't mean much.

I've been following their stretches outlined in their book for my back problems. I can't say they work any better/worse than other methods, but I have improved. It might help you.

Here is a recent thread, and I keep meaning to update my situation, if it helps anyone:

http://www.early-retirement.org/forums/f38/weird-back-pain-58545.html

Good luck - ERD50

 

[Rich_by_the_Bay]

Ask your doctors about "Piriformis syndrome."

Good luck.

 

[W2R]

My sincerest sympathies!

Wish I had some words of wisdom to add to those already provided. If you have you changed cars to one with a less comfortable seat, or if your car needs suspension work, and if you also drive on rough terrain, that can sometimes cause considerable chronic pain in that area. This is the only suggestion I have.

Anyway, good luck and I hope you find out what is causing this, and soon.

 

[73ss454]

If it were me I'd get myself to the Mayo Clinic ASAP.

 

[palomalou]

I cannot recommend the Mayo Clinic highly enough. Were it not for them, I would most likely not be alive, healthy, or contemplating retirement today. Best wishes.

 

[TromboneAl]

This started with the new car right? Do you think that's the cause, or it just uncovered it? Can you not drive for a month?

I've had some problems like this, and once I avoided the cause for while, the problem went away, and didn't come back even when the cause was present again. That is, the inflammation is a big part of the problem, and once that went away, the problem didn't come back.

You didn't say it, but did you follow the stretching and strength regime religiously for a good while? It could be worth going overboard on those for a month.

Perhaps another local specialist before you go to the mayo.

Good luck -- I'm sure you will find a solution.

 

[Buckeye]

I would go to a highly recommended accupuncturist.

 

[oldtrig]

I wold highly suggest to do what Rich in Tampa said. He is a retired doctor and knows what he is talking about. Oldtrig

 

[jclarksnakes]

+1 on listening to what Rich in Tampa said. Your symptoms do sound like Piriformis Syndrome. This is like typical sciatica except that the S1 nerve is trapped and irritated by the piriformis muscle rather than at the root of the nerve where it comes through an opening in the spine at the level of the fifth lumbar and first sacral vertebra. In Looking at the list of medications you have tried. Was hydrocodone effective in controlling your pain and if so how big a dose? Also, did you find the anti-inflamatory meds to provide much relief? What about the cyclobenzaprine and the metaxalone? Specifically did any of those meds provide more relief than the hydrocodone?

 

[Rambler]

+1 on checking on the Piriformis Syndrome. I've never had it, don't know a whole lot about it, but reading your description, this was the first thing that came to mind.

R

 

[donheff]

Sorry to hear about this soupcxan. My brother had chronic pain (different condition) and it was extremely disruptive. I hope some of the suggestions you get here help. Although, I have to say, if some random postings here provide the solution you have to wonder about the value of modern medicine. That said, no one will give this as much attention as you will and the wider your sources the better your odds.

 

[Sue]

I have found the book, The Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief, 2nd Edtion, invaluable for treating all sorts of muscle pain. There is a discussion of how to treat Piriformis Syndrome. You can get the book on Amazon.

 

[soupcxan]

I've read a couple of the books (Mckenzie, Egoscue, Gokhale) and tried their stretches but haven't found anything that works in them for me.

Piriformis syndrome has been mentioned by some doctors and dismissed by bothers based on physical exams. If the SI joint injection doesn't do anything, that might be the next place to hit with the steroids/numbing agents.

The pain that I'm having isn't positional - there isn't a way that I can bend or stretch or push on my muscles that makes me go "ow". It's just this gradual, diffuse pinching feeling that varies in intensity throughout the day, though I can't trace it to any particular activity or posture.

I don't know much about trigger points so will look into that. I haven't tried accupuncture yet but may eventually get there.

None of the meds I've tried have made much of a difference. The "best" has been the ultram (50 mg) but it is not 100% reliable. The hydrocodone (5mg/325 APAP) is less effective and really spaces me out. Cymbalta made me feel even worse (not the pain, but mentally). No noticeable difference from the anti-inflammatories, the nerve drugs, or the muscle relaxers (though the latter certainly puts me to sleep). I have not tried lidocaine patches yet but may ask one of my doctors about that.

It seemed like this started when I got a new car last year, but the car is gone and even if I go on vacation and don't drive a car at all, I still have the pain, so it's only a driving issue. I have tried doing the stretches/core exercises aggressively (30 minutes 6 days a week for a month) but didn't make a noticeable difference.

 

[jclarksnakes]

I got fairly good relief using Ultram when I had sciatica several years ago. I liked that it did not make me as sleepy or stupid as the narcotics and muscle relaxers which were also effective. I also got some relief taking NSAIDs. The fact that the NSAIDs are not effective for you does point to Piriformis more than a problem at the root of the nerve and where it comes out of the spine. The stretches and core exercises are probably not working for you because they are likely intended to treat more typical back problems and related sciatica rather than the Piriformis or whatever problem you actually have. I think you need to find a physician who really knows about Piriformis. He will probably be able to determine if this is the problem and if so will prescribe therapy with the right physical therapist to treat it.

 

[Texas Proud]

Ask your doctors about "Piriformis syndrome."

Good luck.

I did not know what it was called, but I was going to suggest a pinched nerve... I would suggest you follow Rich's advice...

My mother had one in her wrist and had problems all over her body... she went to many docs and nobody knew what was wrong with her... she, like you, was just going to try and live with it...

Finally she went to a doc that knew exactly what was wrong, did a test to verify and (IIRC) a few cortizone shots later she was fine... that was over 40 years ago and it has never reappeared...

 

[TromboneAl]

It's possible that you would need to not drive a car for six weeks to see a result. Just grasping at straws here, but if this is some kind of inflammation thing... I can only say that I've had similar issues (neck, back, knee, wrist, shoulder) which I thought were permanent, but which are now totally resolved.

 

[Texas Proud]

It's possible that you would need to not drive a car for six weeks to see a result. Just grasping at straws here, but if this is some kind of inflammation thing... I can only say that I've had similar issues (neck, back, knee, wrist, shoulder) which I thought were permanent, but which are now totally resolved.

If this occured because of a new car... well, when I bought a new car back when my back problem came back big time... I went from cloth seats to leather.... and the leather was hard for me... I used a pillow for awhile... when my back pain went away I tried it without the pillow and the leather had softened up....

Also, I moved my wallet from my back pocket to my front over 30 years ago because of this same kind of problem...

 

[jclarksnakes]

I have been thinking some more about this and if it was Prirformis Syndrome it would seem to me that it would have some effect on your S1 nerve which would show up as an abnormal result on a nerve conduction test. I think you should try to get an EMG done. An EMG is similar to a Nerve Conduction Study but more invasive and probably more expensive. It could help to find your problem. If that comes back okay there are other things to consider. A pelvic dislocation or fracture could produce symptoms similar to yours. You did mention cramping higher up at the level of your shoulders. I do not know if that is significant but has it been explored yet?

 

[rgarling]

google piriformis stretch. Try that and some extended cold water soaks in the tub. The water depth should be from (above) the belly down. Water should be 55 to 60 degrees F. (You might eventually learn to think of these soak sessions as invigorating.) You can add ice as necessary and might even target the hip areas with it.

 

[jclarksnakes]

google piriformis stretch. Try that and some extended cold water soaks in the tub. The water depth should be from (above) the belly down. Water should be 55 to 60 degrees F. (You might eventually learn to think of these soak sessions as invigorating.) You can add ice as necessary and might even target the hip areas with it.

Why cold baths? I would have thought that hot baths would be the better choice. OTs and PTs I believe also use contrast baths alternating between very hot and very cold water soaks to free up joints. I am wondering if it would also work to stretch a muscle. I am going to wednesday night trivia contest tonight and will ask an OT who is on my team.

 

[rgarling]

cold baths -- he likely needs to reduce inflammation in the entire hip area. Repeated, prolonged cold/ice bath will probably help. Heat and/or contrast will increase blood flow and probably inflammation along with it.

 

[simple girl]

Have you had any deep tissue work to the piriformis area? (deep pressure point massage type of therapy) Any ultrasound to the piriformis area?

So sorry for your ongoing pain. I lived with chronic pain for about 15 years, so I understand.

 

[jclarksnakes]

I have been doing a bit of googling about Piriformis Syndrome and find lots of information. Some of it in disagreement with other information. This article in medfaxx looks pretty good.
Piriformis Syndrome - What Is It and How Do You Treat It | Articles
On the question of hot versus cold treatment there seems to be one side saying that it is primarily an inflammatory problem and so should be treated with heat and the other saying it is just a tight piriformis muscle and that the muscle can be stretched with specific exercises. The fact that Soupcxan's pain does not seem to be relieved with NSAIDs may, or may not be significant.