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swaye
New Member


Date Joined Oct 2011
Total Posts : 19
   Posted 10/26/2011 9:44 AM (GMT -6)   
Hi everyone....I am new here.  I have been reading health boards for years looking for answers but I have never joined because I didn't think after 4 years I would still be dealing with a chronic pain problem.  I guess it is my never ending hope that by now I would have a better life and partial denial that chronic pain is my reality.  I have been seeking help from the medical community and also alternative treatments.  One doctor recently told me that pain is the outward expression of internal rage.  So I guess I am here looking for support since my husband is sick of listening to me and I don't have anyone else to talk to.  Maybe talking to other people in the same situation will ultimately make me feel better.  I hope that is possible....
 
Now on to my question - I just wanted to get some feedback from others about a few medications.  I know that each persons experience can be completely different.  My problem during the day is the fibro pain in my neck and upper trap and my problem at night is a sort of burning nerve pain that is so intense on both sides that I can't find any comfortable way to sleep.  I take (1) 50 mg tramadol in the morning and that helps my lower back enough to make it through the day as long as I don't stand too long.  I take one 5mg vicodin at night and 20mg of amitriptylne to help me sleep.  I also have this strange ritual of putting 'salonpas' patches on my thighs and piriformis so I can actually sleep because the nerve pain is so bad. I had a laminectomy in 2000 at L4/L5 at age 28 and everything was fine and I returned to work and got on with my life.  In 2007 I had a baby and was told I had an annular tear on the disc under the one I had sugery after the pregnancy.  I had cortisone injections that didn't help.  Another doctor told me it was my facet and had more cortisone injections that didn't help.  The next doctor did a neucleoplasty and burned the disc so it shriveled up and that did nothing.  Then I had double side rhitzotomy at L4/L5 that did very little.  Then I was told it was bursitis in my hips so I had a seriese of cortisone injections which helped a bit but the burning always came back.  I did 7 rounds of prolotherapy because the next doctor told me it was my SI joint that was unstable.  Then another double rhitzotomy at the SI joint level with minimal relief.  In the last few months I have moved onto trigger point injections around the piriformis and thigh and in the upper back (trap/neck/shoulders) along with massage and dry needling and would say that has given me about 40% improvement.  I hate to bore everyone with all this history but not one doctor has been able to tell me what is causing this burning pain through my butt and thigh area and what medication I can take that might help.  I have had several MRI's and discography and they show the damage at the 2 disc levels but not a lot of stenosis which is what I thought my problem might be. My gut tells me it is my piriformis that is in a constant spasm and that is it irritating my sciatic nerve.  I do stretches daily but it makes no difference.
 
I wrote down a few medications to talk to my pain doctor about tomorrow but I wanted to see what others thought. I want to know if they have helped others for nerve pain or fibro pain in the upper back.  The only one I have tried was neurotin at 300mg and it gave me an ulcer and didn't do much for pain but did knock me out for the night.  Here are the meds:
 
Klonopin
Flexeril
Neurotin
Mirapex
 
Any feedback would be greatly appreciated.

Successful L4/L5 laminectomy 2000. Tore L5/S1 in 2007 after accident. Chronic nerve pain which I have been trying to solve for 4 years. Recently diagnoised with fibro due to upper back pain with tender trigger points. Tried every type of doctor and every type of treatment available with minimal success.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16787
   Posted 10/26/2011 11:05 AM (GMT -6)   
Hi Swaye and welcome aboard. I am glad that you found us but very sorry that you have to be here. From reading your story you pretty much have been put run thru the wringer so to speak, and still having a lot of problems.

I think you probably know by now that the standard pain medication that we take has little to no effect on nerve pain, thats where the medications used for nerve pain come into the picture. Other than Neurotin has any of your drs tried you on anything else like Cymbalta, or Lyrica? Dom you have a copy of your most recent MRI report and if so what did it reveal?

I really wish i could offer up something else to you but from what you have written here you have tried all of it and I am not sure what is left for you to try.I would like to ask you what dry needling is, that is one I have not heard of before.

Anyway, I wanted to pop on and tell you welcome aboard. Please keep us posted on how you are doing.
Moderator Chronic Pain Forum

cogito
Veteran Member


Date Joined Oct 2010
Total Posts : 932
   Posted 10/26/2011 11:39 AM (GMT -6)   
Hi Swaye,

I have piriformis syndrome, caused by injuries to my hip, SI, etc. from a car accident about 7 years ago. Someone crossed the highway median and we collided. The seat belt and airbags saved me from most injuries, but when our cars collided, my body was thrust forward and my right knee smashed into the dashboard. That send my femur back, ripping my SI, tearing muscle, cartilage, etc..

I ended up having hip surgery, but also had some very effective injections into my SI that relieved the pain there.

My physical therapist also adjusted by SI twice a week for about 6 months, to try to keep it aligned as the SI ligaments healed.

He also taught me a piriformis stretch, it is hard to explain in writing, but I found it gave me a better stretch than the more common one (where you sit, crossing one leg over the other and gently pull that leg farther). I have long legs and needed something different.

I am assuming the burning pain you get is from your sciatic nerve -- and some percentage of people have that nerve pass through the piriformis. That, apparently, is my case.

Here's a shot at the other stretch:
1) start by being on the floor on your hands and knees.
2) rotate the leg to be stretched inwards (i.e. across your abdomen), pivoting on the knee.
3) then "walk" yourself back using your hands, so that the angle between the rotated thigh and the floor decreases. Don't "walk" straight back, but on a slight angle favoring the side you want to stretch). Alternately, you can try bringing the knee in a bit, so it is closer to your center of gravity.
4) you might need to find just he right degree of rotation and angle, but if you do it right, you'll feel a stretch in your piriformis.

Of course, you might have other medical issues and should check with a professional before trying the above.

If the cause of your burning pain is a tight piriformis, a routine of the above may help. For medications, the only muscle relaxant that doesn't make me feel really crappy is baclofen (or the benzodiazepines, such as valium). Another important tool is ice. I find that it helps me much more than heat (esp. nerve pain). Moist heat may help with muscles, though.

One more idea: I recently got lidoderm patches. I don't think they help much but I believe there are muscle relaxant patches too. If so, maybe one across your piriformis?
C4-T4 Scoliosis (disk degeneration, stenosis, narrowed neuroforamen, bone spurs), RT hip and SI joint damage from car accident. Also, pectus excavatum, supraventricular tacycardia and mitral valve prolapse syndrome.
Current meds: Ultram ER 300mg daily, breakthrough - hydrocodone 10-15mg, or oxycodone 5-7.5mg. .25-.5mg ativan as needed for sleep, Verapamil 240mg SR (for tachycardia). [/gray

Post Edited (cogito) : 10/26/2011 10:43:12 AM (GMT-6)


swaye
New Member


Date Joined Oct 2011
Total Posts : 19
   Posted 10/26/2011 12:41 PM (GMT -6)   
Thanks for your reponses. Yes, I have had my share in this experience. I have probably had more on the injection side rather than the medication side because I was hoping I could actually solve the pain and I wanted to see if I was actually getting better without medications disguising that. I did try Cymbalta but it gave me insomnia and I didn't notice any changes in pain so I stopped after 2 weeks. My insurance wouldn't cover Lyrica because of the generic gabapentin. The only thing I haven't tried is benzo's or muscle relaxers. I haven't tried them because I know they can make you very tired and I struggle with fatigue as it is. That's why I wanted to check and see how other's were dealing with it. I have tried to avoid medications but now I am at the point where I don't have much choice if I want to improve my quality of life.

I will try that piriformis stretch. I am very tall as well and they say that if you keep stretching the piriformis that it stops squeezing the sciatic nerve but I just never seem to get any relief. I am not sure if my piriformis goes over or under but it seems that SOMETHING that I have tried would have stopped the spasms by now.

The dry needling is a type of acupuncture but just targets trigger points. Instead of having the knots or painful areas injected, they put an acupuncture needle in the spot and they move the needle around under the muscle stops spasming. The doctor told me it can take up to 10 or more times for the knot to finally release itself. It is very painful and not easy to find people who actually do it. I am a bit cautious of how much cortisone I keep injecting in myself since I have had so many injection treatments so I am trying this as an alternative. If you google 'dry needling for trigger points' you can find out more about it. I don't think I can put web pages but if you look under Pain Relief Home, it is a very useful website.

Thanks!
Successful L4/L5 laminectomy 2000. Tore L5/S1 in 2007 after accident. Chronic nerve pain which I have been trying to solve for 4 years. Recently diagnoised with fibro due to upper back pain with tender trigger points. Tried every type of doctor and every type of treatment available with minimal success.

bayoub2
Veteran Member


Date Joined Sep 2006
Total Posts : 2861
   Posted 10/26/2011 2:52 PM (GMT -6)   
I take flexeril 3/day for muscle spasms, still get some doozies. Neurontin is supposedly for the zappy, electrical nerve pain, I think. My fibro pain is more like full body shin splints.

I take klonopin for PLMD, a sleepdisorder where legs thrash all night, like restless legs.

Anyone might be worth a try, all of us are soooo different.

Sorry for your pain-hope it gets better

Maggie
"We never realize how strong we are, until being strong is the only thing left"
Major Depressive Disorder, ptsd, fibromyalgia, chronic pain, l3/4, L4/5 gone, bursitis arthritis sciatica


welbutrin HBP meds abilify seroquel hydrocodone flexeril klonopin magnesium

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 10/26/2011 3:34 PM (GMT -6)   
I use neurontin (gabapentin) 200-300mg x three times a day, oxycodone 10-15mg every four hours and 30mg of amitriptyline before bed. Haven't had my 'joint' pain diagnosed but pain is burning nerve type pain around all my joints and have been to see rheumy and awaiting blood test and MRI results but negative for fibro. The meds listed above only slightly help but at least get some good sleep at night. Ask about increasing the amitriptyline up at night as I found no relief at all below 30mg and had problems with fentanyl and butrans patches as need to take some form of codeine to slow bowel down as have short bowel syndrome and the codeine collided rather badly with the patches, hence the oxycodone.
Crohn's, antiphospholipid syndrome, Crohn's arthritis, very low blood pressure, low kidney function, ezcema, asthma, ileostomy, numerous surgeries for abscessses & strictures. Humira - very bad permanent side effects incl joint pain, hair loss, fatigue & nreve damage. Azathioprine, immodium, simethicone, fludrocortisone, oxycodone, gabapentin, tramadol, amitriptyline, Folic acid, vit d & calcium.

cogito
Veteran Member


Date Joined Oct 2010
Total Posts : 932
   Posted 10/26/2011 4:52 PM (GMT -6)   
I found a youtube video of the piriformis stretch that I do:
http://www.youtube.com/watch?v=rzZfGwhcFn4

This also looks like it might work, but may be easier:
http://www.youtube.com/watch?v=0Z6jlBsgak0

My guess is that the first will be best, given your height. The guy in the video moves right into the stretch, which I definitely don't do. Instead, after I am on my hands and knees, I very slowly rotate my leg and very slowly bring my body's weight onto it by "walking" back on my hands and sliding the straight leg slowly back.

Also, I don't find that Baclofen makes me sleepy or really alters my mental state, unlike basically all the others muscle relaxants. The only down-side I've encountered is that it has a very short half-life (2-4hrs) and so doesn't last very long.

swaye
New Member


Date Joined Oct 2011
Total Posts : 19
   Posted 10/26/2011 6:33 PM (GMT -6)   
Thanks for all your reply's. I feel like I at least has some feedback about medications to take to the doctor with me tomorrow. The hard part is always getting the doctor to slow down long enough to listen. They have a way of making you feel rushed. I have tried for as long as I could to stay off the med's but at some point you have to weigh it against the other things in your life. Now if they could just come up with something that doesn't have such a long list of side effects!

I will check out that you tube video that you mentioned.

And to all a peaceful nights sleep.....
Successful L4/L5 laminectomy 2000. Tore L5/S1 in 2007 after accident. Chronic nerve pain which I have been trying to solve for 4 years. Recently diagnoised with fibro due to upper back pain with tender trigger points. Tried every type of doctor and every type of treatment available with minimal success.

Heather Lynn
Regular Member


Date Joined May 2011
Total Posts : 283
   Posted 10/26/2011 7:21 PM (GMT -6)   
Swaye, welcome to the board. You will find a very supportive group of people here.

Neurontin is often very good for nerve pain. I took it for a while and it provided good relief, but not until my dosage was 300mg 3x a day.

I found Klonopin to not be a very effective muscle relaxant, but also did not make me sleepy once I had adjusted to it, which took about 3 months.

I take Flexeril at bedtime when I am in a flare. It helps quite a bit. It made me very sleepy at first, but once again I eventually adjusted to it.

Good luck at the PM tomorrow.
Fibromyalgia, low back pain/SI joint dysfunction, anxiety, obstructive sleep apnea, endometriosis, asthma

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 10/27/2011 12:49 AM (GMT -6)   
Welcome here, Heather, I am rather new myself after a period of lurking here.

I feel for people that have doctors that are in a hurry. I have been fortunate with a urologist, a surgeon, a GP, and oncologist that are never in a rush. I met with my Oncologist today for a full hour, which is a typical visit with him. Gives me plenty of time to get all my questions answered, and to bounce ideas off of each other.

You have been through quite a bit, that is some story of your own struggles. I wish you only the best ahead, and hope you find the right meds for your situation.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10
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