No Relief Ever and Pain Increasing; How Do You Stand It?

Posted by vickirobinson1952 @vickirobinson1952, Mar 12 7:18pm

My husband has chronic pain, and has had since his teens. (He is 62 now.) About 3 years ago he developed pain in his "sit bone" (ischial tuberosity) that has been steadily getting worse. Drugs don't touch it. Abbott's dorsal pain stimulator had no effect. Cortisone shots do nothing. (The lidocaine or whatever it is that accompanies cortisone shots gave an hour of relief.) He can't sit in a car or a plane for more than an hour without severe pain. He was a kayak racer, and loved it, but that's over. He can't ride his beloved bike anymore. We can walk about a mile or so, no more. They can't do nerve ablation. His pain doctor told him that perhaps a bursectomy might help, which is something we are investigating, but the pain specialist and neurologist have essentially said that they can't do any more for him. And so far, we have been unable to find an orthopedic surgeon who does this procedure.

And the pain just keeps getting worse. He's having problems sitting, so he's spending more time lying down. That's beginning to hurt too much too.

What does he do when it becomes unendurable?

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Is it his tailbone? That can be put back in place. My GYN did it for me.

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@cjk

To sbc4ca thank you for enjoying the reading of my comment and giving me more information about the "tattoo cream". I had never heard about that one before. The lidocaine patches from the drug stores can be cut with a pair of scissors to fit around a person's neck for cervical pain. I do sew , but since these are one time use patches to use just for twelve hours, it is too much trouble for me to sew any darts on them. But I do wear an old grubby T-shirt when I put one on my neck or back so if I sleep with it on It doesn't come off onto the bed sheets and melt all over them from my body heat. Ttnf, C. J.

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I'm so sorry I didn't mean to say to actual sew them, just to cut then like you would a dart. Sounds like you already figured this out. I've had issues with the patches sticking as well and now will clean the area with alcohol prior and find it helps with that. Obviously make sure it is fully dried first.

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@srush

Well, I sort of get this, but not quite to that extreme. I am now in my 70s and during the middle and early decades of my life I ran 1500 miles/year and mountain biked 1000 miles/year. I was lean and felt wonderful. 7-8 years ago, I was mostly walking, 6-7 miles a day. I found due to pain, that decreased over a year to no more than a block. I had a back surgery (laminectomy) followed by a huge spinal bleed. Terrible pain ensued. I had a lumbar rebuild 4 years later to no substantial relief. Now on a good day, I can walk 3/4 mile but the only true relief I get is sitting on a slap-dash set of pillows and doughnut cushions. I have tried a Boston Scientific spinal stimulator and a lateral stimulator. Neither was helpful. A coupla years of PT was also rather useless. My "new" therapy is to limit caloric intake. I want to lose 25 pounds to see how my back responds. I will be quite skinny, but I think the trial may be worth it. During my oddesy I have also "picked up" neuropathy in my hands and feet. One of my PAs jokingly suggested "a quart of Jack a day." Damn near ready to try that.

So sorry for your husband's pain. While I wish him well, I have nothing to suggest. My flock of pain docs have essentially said sayonara -- sort of "see ya, wouldn't want to be ya." Narcotics, marijuanna, all sorts of herbal add-ons; nothing has worked. I wish your husband well and I sure as hell wish I had an answer. Please wish him well for me. Sam

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So sorry for I know exactly what h is going through. I fell on a icy ramp back in 2015 and hurt my tail bone. An abbott stem unit was placed but the surgeon cut through T9-T10 causing a condition called patchy paralyzes. I had to retire my psychotherapy job as I could not sit or drive without devastating pain. It turned into CRPS and then total neuropathy from all the nerve damage. 600mg.of R-factor alpha lipoic acid helps as does 400 mg of magnesium glycinate and alot of omega3's. I aded other nerve supplements that go along with neuropathy.. Nothing helped. I have tried every concoction you can think of, plus having a BS in Holistic Nutrition and Herbalology, I still have not gotten a handle on this pain. Shots, nerve blocks, the works . If he can take gabapentin, tizandine which is a supper great muscle relaxer, lyrica, lamotrigin, or any of these types of med's, they help tremendously in reducing nerve pain. I've tried them all and they work wonderfully, but I can't take them due to them causing memory loss for me who very much needs my mind to work. I got a big Nikon magnet and sit on it during the day and I'll be darned-it helps. 800 prescribed iburprohen helps along with medical marijuana. Now-here is where it gets complicated. People just do not know how to use medical marijuana. I've taken several CEU courses for my license and there are very specific cannabinoids that work with spasms and pain. The ones that work best for pain and nerve pain are the following; Limonene, Beta-Caryophyllene, Myrcene, Linalool, Alpha Humuene; *** beta-caryophyllene is the ONLY Terpene that can activate Cb2 receptors within the endocannabinoid system. Spasticity is a hugh problem when the nerves around the coccyz do not return to normal. Cbd, cbg, cbn,thc and thca all help with spasticity. CBD helps alot with pain but not nerve pain or spasticity. I try to get a good quality CBD full sprectrum oil from an on-line store with a discount to disabledvindiviuals. Bump that full sprectrum CBD oil to 50 mg a day for two - three weeks consistantly. I get some from Lazarus Naturals or Charlotte's Web, or any notable company with transparent testing. Having a medical marijuana card, i will take 25-50 mg of CBD full spectrum to get all the terpenes available either from a dispensary or from a store mentioned above. After 2-3 weeks build up with 25-50 mg of good quality CBD + full spectrum oil, add something from the medicaid marijuana dispensary high in the other Pain and Spasm catorgory terpens. One has to try both Stavia for daytime use and an Indica for evening with these pain/spasms terpens in it. I also add 1000-1500 of turmeric Extract. Not powder- ya gotta pay more and get the organic extract to help with inflamation. Ice and heat treatments interchangeable. A good magnet to sit on helps a lot. A TENS unit helps me as well. At times I have worn one all night. THC cream on the tail bone area numbs you nicely in the buttocks. Biofreeze 3-4 times a day on the buttocks area. Remove inflammatory foods from the diet. Add meditation, mindfulness meditation, reiki, acupuncture, massage if you can afford these. At 73, i just added 10-325 hydrocodone with tylenol 1/2 to 1 BID. These has helped tremendously. Tramadol is also a wonderful medication for pain. I hope some of this info helps you. It has taken five years of trying this and that and combining agents to now know works most of the time. Of course I have days with my myalgias that are painful as ever on a daily basis. And do not forget that learning self hynosis and progressive relaxation and chair yoga can be of tremendous help. I have written several Alternative
Therapy training moduals for pain management physicals both in Indiana and in Florida where i now reside.

REPLY
@mikaylar

Is it his tailbone? That can be put back in place. My GYN did it for me.

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No, it's the ischial tuberosity, the "sit bone."

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I also have a hard time with sitting. It's been going on for years. I can relate with standing on an airplane. I use a cushion whenever I have to sit out in public. I tried recently sitting on a heating pad and it does help. Good luck!

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My physiatrist who addresses joint pain and such, suggested to me for the same problem, a Roho Seat cushion. But I looked it up and they are $400. But in the meantime, I got on Amazon, A COMFORTANZA Seat cushion. The first one I ordered was “soft” But I sunk right down to the hard chair. So I ordered another one that was “firm” And this does better. But still I can’t sit for more than 45 minutes at a time and then I am back on the couch lying down but that sometimes bothers them. I wonder if it is actually the flesh that is in front of the sit bones that is hurting. Maybe eventually I will buy the ROHO Seat cushion, it is like bulbs of air, after looking at them there is one that is made from plastic, and apparently that one is not very good. But the one made with the rubber or silicone type material is more expensive but after reading all the reviews it is much better. But to pay $400 for something I cannot even try out is kind of scary. But the reviews say that when you talk to a person, they can really help you. Some people use these for their wheelchairs so I figure they must be pretty good. When I sleep at night I try to sleep on one side and then the other so that I am not sleeping on my back because I think sleeping on my back irritates the sit bones also. I feel your pain, and I just said a prayer for you.

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When a doctor says they can't do anything else stop going to them and find someone willing to try. None of us need drs who are no longer willing to even brainstorm. We need them to ne excited to help us.

Have you seen a good chiropractor? They saved my world after my 3rd back surgery. They wanted to cut again and warned me to not see a chiro. (Early 1980s) if they were wanting to cut again anyway, what did I have to lose? I found a chiro who specialized in backs and within months I didn't need my back brace or leg brace. I've been to others that help some but not like her. She had some magic on her side. Lol. I just this week listened to dr Pascal on youtube in Cary, NC. He professes great results with CRPS. Sounds like an intensive treatment but he might be worth doing a zoom with?

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@cathy1111

So sorry for I know exactly what h is going through. I fell on a icy ramp back in 2015 and hurt my tail bone. An abbott stem unit was placed but the surgeon cut through T9-T10 causing a condition called patchy paralyzes. I had to retire my psychotherapy job as I could not sit or drive without devastating pain. It turned into CRPS and then total neuropathy from all the nerve damage. 600mg.of R-factor alpha lipoic acid helps as does 400 mg of magnesium glycinate and alot of omega3's. I aded other nerve supplements that go along with neuropathy.. Nothing helped. I have tried every concoction you can think of, plus having a BS in Holistic Nutrition and Herbalology, I still have not gotten a handle on this pain. Shots, nerve blocks, the works . If he can take gabapentin, tizandine which is a supper great muscle relaxer, lyrica, lamotrigin, or any of these types of med's, they help tremendously in reducing nerve pain. I've tried them all and they work wonderfully, but I can't take them due to them causing memory loss for me who very much needs my mind to work. I got a big Nikon magnet and sit on it during the day and I'll be darned-it helps. 800 prescribed iburprohen helps along with medical marijuana. Now-here is where it gets complicated. People just do not know how to use medical marijuana. I've taken several CEU courses for my license and there are very specific cannabinoids that work with spasms and pain. The ones that work best for pain and nerve pain are the following; Limonene, Beta-Caryophyllene, Myrcene, Linalool, Alpha Humuene; *** beta-caryophyllene is the ONLY Terpene that can activate Cb2 receptors within the endocannabinoid system. Spasticity is a hugh problem when the nerves around the coccyz do not return to normal. Cbd, cbg, cbn,thc and thca all help with spasticity. CBD helps alot with pain but not nerve pain or spasticity. I try to get a good quality CBD full sprectrum oil from an on-line store with a discount to disabledvindiviuals. Bump that full sprectrum CBD oil to 50 mg a day for two - three weeks consistantly. I get some from Lazarus Naturals or Charlotte's Web, or any notable company with transparent testing. Having a medical marijuana card, i will take 25-50 mg of CBD full spectrum to get all the terpenes available either from a dispensary or from a store mentioned above. After 2-3 weeks build up with 25-50 mg of good quality CBD + full spectrum oil, add something from the medicaid marijuana dispensary high in the other Pain and Spasm catorgory terpens. One has to try both Stavia for daytime use and an Indica for evening with these pain/spasms terpens in it. I also add 1000-1500 of turmeric Extract. Not powder- ya gotta pay more and get the organic extract to help with inflamation. Ice and heat treatments interchangeable. A good magnet to sit on helps a lot. A TENS unit helps me as well. At times I have worn one all night. THC cream on the tail bone area numbs you nicely in the buttocks. Biofreeze 3-4 times a day on the buttocks area. Remove inflammatory foods from the diet. Add meditation, mindfulness meditation, reiki, acupuncture, massage if you can afford these. At 73, i just added 10-325 hydrocodone with tylenol 1/2 to 1 BID. These has helped tremendously. Tramadol is also a wonderful medication for pain. I hope some of this info helps you. It has taken five years of trying this and that and combining agents to now know works most of the time. Of course I have days with my myalgias that are painful as ever on a daily basis. And do not forget that learning self hynosis and progressive relaxation and chair yoga can be of tremendous help. I have written several Alternative
Therapy training moduals for pain management physicals both in Indiana and in Florida where i now reside.

Jump to this post

Thank you for this wealth of information! I have non diabetic neuropathy and arthritis in both big toes. I’m in SW Florida area, if anyone knows of a good neurologist or Pain specialist I welcome the information .

REPLY
@cathy1111

So sorry for I know exactly what h is going through. I fell on a icy ramp back in 2015 and hurt my tail bone. An abbott stem unit was placed but the surgeon cut through T9-T10 causing a condition called patchy paralyzes. I had to retire my psychotherapy job as I could not sit or drive without devastating pain. It turned into CRPS and then total neuropathy from all the nerve damage. 600mg.of R-factor alpha lipoic acid helps as does 400 mg of magnesium glycinate and alot of omega3's. I aded other nerve supplements that go along with neuropathy.. Nothing helped. I have tried every concoction you can think of, plus having a BS in Holistic Nutrition and Herbalology, I still have not gotten a handle on this pain. Shots, nerve blocks, the works . If he can take gabapentin, tizandine which is a supper great muscle relaxer, lyrica, lamotrigin, or any of these types of med's, they help tremendously in reducing nerve pain. I've tried them all and they work wonderfully, but I can't take them due to them causing memory loss for me who very much needs my mind to work. I got a big Nikon magnet and sit on it during the day and I'll be darned-it helps. 800 prescribed iburprohen helps along with medical marijuana. Now-here is where it gets complicated. People just do not know how to use medical marijuana. I've taken several CEU courses for my license and there are very specific cannabinoids that work with spasms and pain. The ones that work best for pain and nerve pain are the following; Limonene, Beta-Caryophyllene, Myrcene, Linalool, Alpha Humuene; *** beta-caryophyllene is the ONLY Terpene that can activate Cb2 receptors within the endocannabinoid system. Spasticity is a hugh problem when the nerves around the coccyz do not return to normal. Cbd, cbg, cbn,thc and thca all help with spasticity. CBD helps alot with pain but not nerve pain or spasticity. I try to get a good quality CBD full sprectrum oil from an on-line store with a discount to disabledvindiviuals. Bump that full sprectrum CBD oil to 50 mg a day for two - three weeks consistantly. I get some from Lazarus Naturals or Charlotte's Web, or any notable company with transparent testing. Having a medical marijuana card, i will take 25-50 mg of CBD full spectrum to get all the terpenes available either from a dispensary or from a store mentioned above. After 2-3 weeks build up with 25-50 mg of good quality CBD + full spectrum oil, add something from the medicaid marijuana dispensary high in the other Pain and Spasm catorgory terpens. One has to try both Stavia for daytime use and an Indica for evening with these pain/spasms terpens in it. I also add 1000-1500 of turmeric Extract. Not powder- ya gotta pay more and get the organic extract to help with inflamation. Ice and heat treatments interchangeable. A good magnet to sit on helps a lot. A TENS unit helps me as well. At times I have worn one all night. THC cream on the tail bone area numbs you nicely in the buttocks. Biofreeze 3-4 times a day on the buttocks area. Remove inflammatory foods from the diet. Add meditation, mindfulness meditation, reiki, acupuncture, massage if you can afford these. At 73, i just added 10-325 hydrocodone with tylenol 1/2 to 1 BID. These has helped tremendously. Tramadol is also a wonderful medication for pain. I hope some of this info helps you. It has taken five years of trying this and that and combining agents to now know works most of the time. Of course I have days with my myalgias that are painful as ever on a daily basis. And do not forget that learning self hynosis and progressive relaxation and chair yoga can be of tremendous help. I have written several Alternative
Therapy training moduals for pain management physicals both in Indiana and in Florida where i now reside.

Jump to this post

Do you take the CBD oil under your tongue? Do you space out doses throughout the day? I'm in my state's medical cannabis program but none of the pharmacists have been much help with recommending what I should use. I don't think they offer a CBD oil in tincture form. How can you find the specific forms you recommend?

REPLY
@nancyc777

My physiatrist who addresses joint pain and such, suggested to me for the same problem, a Roho Seat cushion. But I looked it up and they are $400. But in the meantime, I got on Amazon, A COMFORTANZA Seat cushion. The first one I ordered was “soft” But I sunk right down to the hard chair. So I ordered another one that was “firm” And this does better. But still I can’t sit for more than 45 minutes at a time and then I am back on the couch lying down but that sometimes bothers them. I wonder if it is actually the flesh that is in front of the sit bones that is hurting. Maybe eventually I will buy the ROHO Seat cushion, it is like bulbs of air, after looking at them there is one that is made from plastic, and apparently that one is not very good. But the one made with the rubber or silicone type material is more expensive but after reading all the reviews it is much better. But to pay $400 for something I cannot even try out is kind of scary. But the reviews say that when you talk to a person, they can really help you. Some people use these for their wheelchairs so I figure they must be pretty good. When I sleep at night I try to sleep on one side and then the other so that I am not sleeping on my back because I think sleeping on my back irritates the sit bones also. I feel your pain, and I just said a prayer for you.

Jump to this post

I find that sleeping on my abdomen on top of a pillow gives tremendous relief for my chronic low back, left hip and coccyx pain. That way there is no pressure on any painful part. It is somewhat difficult getting in that position but it is very helpful if you can do it. I was a tummy sleeper most of my life until my 60’s so it’s a bit easier for me to get in that position perhaps. But it is the only way I can get to sleep.

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