How to get help for crushing, chronic sciatica

[soupcxan]

I have posted on this before but though I would throw it out there again. Things have gotten progressively worse and I am just at the end of my rope.

I am a 31 y/o white male, 6 feet, 145 lbs, no pre-existing conditions, no accidents or injuries. In mid-2011 I started getting diffuse pain and paresthesia in the buttocks and backs of my legs when sitting. It would go away if I stood up or laid down. The pain has gotten much worse and now comes on when I lay down and is interfering with my sleep. The pain still gets worse with sitting and goes away with physical activity. Generally I am not sore and it doesn't hurt the instant I sit down, but after a few minutes I feel it coming on and gets worse the longer I sit/lie in one position.

I have tried so many things and no one has even been able to tell me what the root cause of this is. I am worried about losing my job and my wife. The joy in my life is gone because there is so much pain everyday.

Does anyone have any ideas on how to get a diagnosis and some treatment options? Every test that has been run has come back normal. I went to the Mayo clinic and they had no ideas. I just moved to Houston, TX and there are so many doctors here but I don't know how to find someone to help me.


Here is what I have been through-

Doctors: internist, orthapedic surgeons, neurologists, physical medicine & rehabilitation, pain management, rheumatologist, neurosurgeon

Imaging: x-rays spine and pelvic, MRIs of lumbar spine (both lying down and sitting), thoracic spine, pelvis, lumbosacral plexus

Diagnostics: 2 EMGs, blood work, HLA-B27 (negative), celiacs disease (negative)

Prescriptions: NSAIDs, hydrocodone, ultram, muscle relaxers, anti-epileptics, elavil, requip, lidoderm and flector patches

Steroid injections: lumbar back, piriformis, SI joint, facet joints L4-L5

Physical therapy, chiropractor, acupuncture, TENS unit

 

[Alan]

Does anyone have any ideas on how to get a diagnosis and some treatment options? Every test that has been run has come back normal. I went to the Mayo clinic and they had no ideas.

I am at a loss as to what to suggest if the experts cannot find the cause of your pain.

It sounds very similar to what I had at a similar age, and nerve conductivity tests plus an equally painful test with needles and electric currents into the large muscles of my buttocks and lower back confirmed that the bulging disc in my lumber region was causing nerve damage (an MRI showed the bulging disc). A discectomy is what cured me, but I'm sure the docs would have easily zero'ed in on that problem for you.

 

[bbbamI]

I am so sorry... I always recommend a pain management specialist, but I've seen you have looked into it. I've had chronic pain and I know what it's like.

I frequent a prostate cancer forum (since DH was diagnosed in 2010), and one of the members belongs to the chronic pain board. I'm not familiar with this particular forum, but it may help in your situation.

Chronic Pain - HealingWell.com Forum

If you click on Chronic Pain 101 at the top, you might find a resource that can help you.

 

[timeasterday]

Sorry to hear about your pain. I have had quite a bit of sciatic pain in the past, possibly connected to a bulging disk but I am not sure if the two are related. The only thing that has brought me relief from the pain is regular, somewhat intense exercise. And deep stretching after every workout. Forward & reverse lunges, squats, deadlifts, and "supermans" help a lot.

 

[MuirWannabe]

Your situation sounds awful. The only thing to suggest is to keep trying to find the 'right' expert medical help that actually works for you. But I don't have any brilliant ideas on how to find that particualr help based on everything you've already tried.

I have pretty bad sciatica as well. Had it for about 4 months two years ago. And now it has come again and for the last 5 months. I thought stretching exercises would alleviate it but so far to no avail. Aleve works well for dulling the pain although I hate having to take it literally every day. I have yet to try most of the things you have already tried. So your news is pretty discouraging to me.

I can't imagine having to live with this pain permanently. There must be a way to get rid of it. Mine starts in lower back and goes all the way down the back of my leg to my right foot. It is just on that right side of my body.

I wish the best. You have to keep searching for a solution. Retry some of the same steps but with different doctors who may have better advice or different ideas.

Good luck!

 

[Alan]

Sorry to hear about your pain. I have had quite a bit of sciatic pain in the past, possibly connected to a bulging disk but I am not sure if the two are related. The only thing that has brought me relief from the pain is regular, somewhat intense exercise. And deep stretching after every workout. Forward & reverse lunges, squats, deadlifts, and "supermans" help a lot.

Not heard of supermans before. (I still need to do all the other exercises you mentioned).

If it involves wearing bright red underwear over the top of your pants then count me out

 

[MuirWannabe]

Sorry to hear about your pain. I have had quite a bit of sciatic pain in the past, possibly connected to a bulging disk but I am not sure if the two are related. The only thing that has brought me relief from the pain is regular, somewhat intense exercise. And deep stretching after every workout. Forward & reverse lunges, squats, deadlifts, and "supermans" help a lot.

I'm not sure that exercise helps. Stretching maybe although not much with me yet. I run 30+ miles a week and play a fair amount of competitive tennis. Neither has helped with sciatica pain. I could not play the tennis without the miracle of Aleve and/or Advil and a bunch of it.

Ironically enough I can run a half marathon without much problem from the sciatica. But putting my pants on or sitting down into my car can be a killer.

From talking with others it seems everyone finds their own way to manage their symptoms from sciatica. Each person has a different approach but they eventually find some method that controls it reasonably well. I have yet to find that for myself and it certainly sounds like the OP has not found it.

 

[Nemo2]

I had it in Saudi for 6 months, I could feel it in my right leg all the way down to the ankle, where it probably hurt most....(doctors at an Austrian run hospital even tried putting me in traction, to no avail).......the only time it didn't hurt was when I ran......after the first 1/2 mile or so it eased off, and people who'd seen me in discomfort during the day looked at me like WTF?

Then one day...it was gone...just like that.

 

[haha]

I am very sorry Soup. This sounds very hard to bear. I have no suggestions, but I wish you good luck that your pain will be relieved soon.

Ha

 

[eytonxav]

Soup,

Sorry to hear you are still going through this. As I told you before, I went through a very bad sciatic pain a number of years ago and the Drs could do nothing to make it better. It went on for quite some time and I was very frustrated. Then a trainer at our MegaCorp health club told me about a book called "Oh, My Aching Back". There were about 10 stretching exercises in that book that I did religiously for a few weeks and then the pain was gone. Not sure whether you ever looked into to that, but again, I was at the end of my rope as well, and it worked for me.

Hoping you can get to the bottom of this and resolve the pain.

 

[figner]

Very sorry to hear about your continuing pain issues! In the interest of just getting ideas out there, how about yoga (there are many different kinds, maybe one that emphasizes stretching and strength poses), or trigger point therapy/massage?

A relative has used this book to self-massage trigger points with some success, though not for the same kind of pain that you have:

The Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief, Second Edition: Clair Davies, Amber Davies, David G. Simons: 9781572243750: Amazon.com: Books

By the way how do you spend most of your day? Is it possible your regular activities are aggravating the pain? If it's that bad, it might be worth it to change your life in major ways.

 

[JoeWras]

soup, I feel for you, I do. People who haven't had this don't understand, it can ruin your life. I had a very bad episode myself at age 25. I think it was too much sitting. Went through the whole mess like you (except no MRI, they were too new then). I had bone scans, HLA-B27 test for AS, all that mess.

The only thing that got me out of it was exercise. I didn't want to hear that, but after being fed up with it, I decided to go for it. PT didn't help me, it was exercise on my own.

GENTLE exercise to start with. Not tennis, not running, but gentle stuff. I used a program called "The Y's way to a healthy back" (https://www.google.com/#hl=en&sugex...0f57df68577ca6&bpcl=36601534&biw=1094&bih=830) It took 4 weeks before for I noticed anything, but it ultimately worked! I then added swimming to the mix. Only after I felt better for a year did I do any impact stuff.

Tell you this much: adding gentle exercises like this won't hurt or cost you anything (maybe a few bucks for the book, but it is cheap). No matter what you do, exercise is worth a shot.

Best of luck. I hope you find relief.

 

[timeasterday]

Not heard of supermans before. (I still need to do all the other exercises you mentioned).

If it involves wearing bright red underwear over the top of your pants then count me out

I was doing these over 15 years ago in PT when I hurt my back, but only heard the term "superman" when doing a recent exercise program. Basically just laying on your stomach and raising your arms & legs off the floor in a Superman pose. Helps strengthen the back and butt.

 

[Alan]

I was doing these over 15 years ago in PT when I hurt my back, but only heard the term "superman" when doing a recent exercise program. Basically just laying on your stomach and raising your arms & legs off the floor in a Superman pose. Helps strengthen the back and butt.

Excellent!!

I do this once or twice a week during an exercise class I go to called Body Flow which is a set of routines consisting of yoga and Pilates with a Tai Chi warm up and cool down.

 

[TrvlBug]

I also suffer from sciatica and it has gotten worse since I retired and became more sedentary. As you do, I find relief when walking and standing. Sitting can be unbearable. It's under control now and barely bothersome...I walk at least 1 hour a day plus never sit longer than 15 minutes or so w/o getting up and walking around a bit, or at least standing. I do recall the doctor telling me to walk, walk, walk when the symptoms first started about 5 years ago. I have also started some quad strengthening exercises as they seem to help.

Twisting my knee seems to bring about excruciating pain for about a week or so and I've started wearing a knee brace and being very aware of my movements when house cleaning, decluttering, etc. If you can, perhaps keep a log of activities that help as well as make things worse. Try and find whatever works for you that eases the pain.

 

[EveryLady]

Soupxcan,

Like others, I am sorry. As you've found, undiagnosed and thus untreated pain involving nerves can make a condition chronic and widespread.

Two thoughts. First, see you've tried acupuncture to no avail. What about approaching acupuncturists for diagnosis? This is all pretty much thirdhand (so take it in that light).

A California friend's family and acquaintances have used a now-retired acupuncturist to diagnose and treat with remarkable success a variety of conditions over the years. My friend has had many conversations with this doctor and tells me this. That acupuncturists with a Chinese medical degree can often diagnose conditions not otherwise detected by conventional Western methods and testing. More, in contrast to our tradition of peer-reviewed medical literature, acupuncturists in China traditionally did not share new-found techniques and so there can be a wide variety of approaches and skill levels.

The difficulty is in locating the right doctor. From my friend's experience, a skilled diagnostician will first focus on the determining the physical malfunction then treat. A starting point might be an acupuncturist in his/her 50s or 60s. Who trained in China.

Second, since last summer I've been having first-hand experience with what I assume is coccyx pain that can radiate like you described. I've only made one quick trip to my internist who tells me it can be quite persistent. No testing. The pain stops immediately upon standing. Google searches show that this type of pain can become more pervasive reaching the point where it is evoked when lying down.

Offhand, I don't recall your early post describing any lifestyle changes (i.e., avoiding sitting, various pillows etc.). A key is to avoid any further irritation of the nerves that will lead to chronicity and spread.

As for me, my insurance currently doesn't cover acupuncture. I'll be switching policies to resume treatment in January. (Shifts in sitting positions to avoid evoking the coccyx pain has caused another successfully treated issue to reoccur.) In the interim, I am finding that the original coccyx issue is slowly getting better. Being retired and not having to drive much unless I choose to or sit at a desk has really helped here. So I can appreciate that lifestyle changes aren't always possible.

Hang in there. The experiences I've had with chronic pain have pretty much been short-term but still worrisome enough for me to learn that most who are not in pain don't really grasp how discouraging it is.

 

[haha]

Soupxcan,

A California friend's family and acquaintances have used a now-retired acupuncturist to diagnose and treat with remarkable success a variety of conditions over the years. My friend has had many conversations with this doctor and tells me this. That acupuncturists with a Chinese medical degree can often diagnose conditions not otherwise detected by conventional Western methods and testing. More, in contrast to our tradition of peer-reviewed medical literature, acupuncturists in China traditionally did not share new-found techniques and so there can be a wide variety of approaches and skill levels.

The difficulty is in locating the right doctor. From my friend's experience, a skilled diagnostician will first focus on the determining the physical malfunction then treat. A starting point might be an acupuncturist in his/her 50s or 60s. Who trained in China.

I second this information, with one caveat. It is not easy to ascertain that the acupuncturist uses disposable needles only. I was treated by a Korean surgeon who got Chinese training when he had problems with his US state medical board. I had adult onset asthma, which came after I subjected my self to too much toxic fumes doing a kitchen project. I was in rough shape, my doc wanted to give me prednisone in addition to my inhaler, I had to sleep sitting up, et cetera. Three weeks of 3x/wk sessions with this acupuncturist cured me. Well, I was much improved and the final cure was achieved after a few months of not stressing my breathing.

If I could ever figure out how to guarantee that I am getting one-use needles I would find someone in Chinatown to handle this or that issue.

Ha

 

[MikeWillRetire]

If you haven't already heard of Dr. John Sarno, you may want to do some research on him. Not everybody is open to his ideas since they are psychology based, but many have been helped. There is a forum called "TMS help" if you want to see what people have to say. Also, search youtube for the John Stossel interview of him.
Wish you the best.

 

[NW-Bound]

Sorry to hear about your problem. The only long-term pain I have suffered was from kidney stones, but it was usually only over a period of a few weeks. Chronic pain really degrades the quality of life.

I am surprised that no diagnosis had been made. From the experience with my mother's back pain problem, I thought that with MRI and other advanced methods, diagnosis would be a sure thing, and the only thing left for debate would be the proper course of treatment. I did not know that they might not be able to find the cause in some cases, such as yours.

 

[Ally]

I am do sorry. I suffered from it after falling on my hip years ago. Thankfully after NSAIDs and treatment by a chiropractor ( who I normally wouldn't endorse ) it eventually went away.

I hope with time you will also feel some relief. It's a miserable problem. I also found sleeping on one of those blow up air mattresses was much more comfortable than a conventional mattress.

 

[Amethyst]

I am so, so sorry. Since sitting brings on your misery, have you looked into getting a standing workstation? They are not cheap, yet some people in my workplace have gotten the employer to pay for them on the strength of a doctor's recommendation. They are adjustable to the user's height and you can get a cushioned mat (similar to what hairdressers use) to take some of the strain of standing.

I hope relief comes to you soon. You are so young to be putting up with this.

Amethyst

 

[Moemg]

So sorry you have not had any relief . I would try a chiropractor . They are usually covered by insurance and it may be just what you need .

 

[SumDay]

Been there, done that.

Here are things that have helped me:

1. I walk at least 2 miles a day
2. Yoga at least twice a week
3. Thai Yoga Massage (monthly)
4. Regular Chiropractic visits
5. Skelaxin Rx when it gets really bad

I used to scream from the pain, scared my kids to death. I honestly think stress brings mine on, but I attribute the above to almost no flare-ups in the past few years.

The Thai Yoga Massage is glorious by the way. Well worth the $$.

Good luck to you & keep us posted.

 

[ohyes]

Soup,

Hoping some of the advice is beneficial. I am sorry for your pain and hope you find relief soon. My mom suffered from sciatic pain in her 40's. It no longer bothers her, but it was certainly a major issue back then. She spent time in traction every day, but I have no idea if it did any good.

Keep us posted on your progress, please.

 

[noelm]

I am not your doc but 2 suggestions that worked with my aunt. Ponder/discuss/read over it and decide yourself.

She took intensive PT and magnesium supplements. When it started she was about 41, lived through it until almost 50 and then in 3 years, the pain is almost gone (but the age factor is kicking in).