Oh so much pain!

Well, I made it through the withdrawal period, but the pain & weakness in my leg, and to a lesser degree my low back, is quite bad. I was pulled off all pain meds -- even Lyrica -- because even though I was doing well, my former PM decided suddenly that all his patients would do better with no pain meds -- just twice monthly epidurals for all. But I assumed I could at least take Advil. Nope. "That causes hyperalgesia, too." The research I've seen says that OIH, if it ever resolves, has not been documented as improving in 5 months or less (longer times are being tested). I'm just not sure how I'm going to make it without any pain control.

I was given Seroquel to help with sleep. It worked for 2 days & then the side effects became so severe that I can't sleep anyways. I've been looking into Kratom, but am still concerned both about the DEA's push to label it a Schedule I & the fact that the FDA currently has a ban on importing Kratom (and as far as I know, there isn't anyone growing it here in the US). My psychiatrist had mentioned ECT, but isn't willing to schedule that for another 3 weeks minimum. I seriously need a break from this pain!

Has anyone else gone through this? How do you manage?

Perhaps I misread your post but are you saying the drs offer eppies twice a month? No one in their right mind would consider that option, at least I sure wouldn't.

Experience has been from reading threads here over the years anyone going off of their pain meds has much worse pain for quite some time. I am at a loss what to even suggest at this point. I feel certain you already know all of the usual things to do to combat pain without being medicated.

I am just having problems wrapping my brain around your situation. As far as ECT goes I am just not there yet on that one either.

Take care.

My neurologist is trying to get me in to a new PM. I definitely agree that twice monthly epidurals is a bad plan. As it is, my spine is covered in Tarlov cysts from ~6 epi's a year (often multiple levels with each round) for the last 12 years. I've actually been reading about a doc in TX who treats them & has had good results (most docs consider them a benign, incidental finding on scans).

I'll give the arnica a try. My pain is mostly nerve pain, but it's worth a try. The PM I was seeing only does epidurals. I asked before & he said he doesn't do facet injections anymore & he never did trigger point injections. I don't know what's going on with him, but I was dose-stable and functional for over 10 years & now I can barely handle basic personal hygiene, often needing help. I had started back to work after being treated for another disabling condition, only to find 2 weeks later that I was losing my pain meds & PM suggested I reapply for disability under a new diagnosis. He said it's better to stay in bed 22+ hours a day than to be on pain meds & working. I've already developed sores and am so miserable. I just want my life back.

I am in shock that this is going on. I have read a few posts now that Dr's are completely taking people off of their meds.

As stated above, repetitive injections can harm the body. Is it possible for you to move to another Dr or go for a 2nd opinion?

Have you possibly looked into alternative treatments? I know some people that it has worked for...Unfortunately I can't say they have for me :-( but there are a few out there that people have luck with such as acupuncture, supplements, etc. Again I haven't had luck with them - but I know a few people who have had relief from them in my support group.

I wish you much luck and I hope you receive some relief soon.

Shelly

I'll have to check out the OTC TENS units. I used to go for PT years ago & they did that. It's the reason why I got the SCS (now removed due to infection). I didn't realize they now sell them at retail stores. I thought I'd have to wait until I could get a doctor's order. I'll have to check that out as soon as I can struggle out to the store. Thanks! :)

I'm just trying to manage until hopefully I get accepted at this new pain clinic (at Rush). They have a very, very extensive application/interview process before they'll agree to take on a new patient. My neurologist sent them his referral & records. Then, they need the records from my most recent PM. After that, there is a phone interview with me. If I make it through that successfully, they will set up an initial consultation and only after that will they agree to take me on as a patient. They don't write for any opioid pain medications, but supposedly they are one of the best groups in the country. Personally, if my pain can be managed without opioids/meds, that would be my preference. We only ended up on them with my former PM after trying dozens of alternatives that didn't help/didn't help enough on their own.

It's just getting harder & harder to walk each day with this constant bed rest. I'm going tomorrow to join the local fitness center as it has a heated therapy pool so I can try to walk a bit in the pool. I've got to do something as I'm falling more & more, which of course both my former PM & my current psychiatrist (who came up with this stupid plan) blame entirely on withdrawals. The psych said it will take me at least 6 months to get through the withdrawals. She wants me to take 75mg of Seroquel now. We keep upping the dose because I quickly become tolerant to each dose. I hate it. I feel like I'm walking through a swamp the next day -- which, again, she conveniently blames on on "withdrawals"... problem is, when I skip the Seroquel, I don't feel that way. Why do some doctors feel the need to blame pain meds for every single issue their patient presents with? Reminds me of this one PCP I used to have that refused to prescribe me Ceclor for bronchitis unless I stopped my pain meds. Even though I've had bronchitis every year since I was 5 years old, she insisted that it was the fentanyl causing me to get bronchitis. So I'd go off my pain meds cold turkey, would land in the ER/hospital for a week & she'd finally break down and give me antibiotics for what had since turned into pneumonia. My PM was saner back in those days & he'd keep explaining to her that there's no reason I couldn't be on Ceclor & fentanyl at the same time, but the next year she'd pull the same stunt. Now I've finally got a really awesome PCP and it's my (now former) PM that has adopted bizarre ideas about oral pain meds (not just opioids -- anything). For that matter, I suppose he's actually opposed to pretty much all oral meds as I had to quit his practice because he didn't want me taking the psych meds my psychiatrist prescribed either (Paxil, Seroquel &, on the rarest occasion, Klonopin) and my pain contract gave him the power to decide to drop me if I filled them at the pharmacy and/or if they showed up in a UA.

I'm just so frustrated by all this. I hate being at the mercy of these doctors who get to decide on any given day whether I will spend the day in bed, or be able to get out & about a bit.

Tirzah said...
My neurologist is trying to get me in to a new PM. I definitely agree that twice monthly epidurals is a bad plan. As it is, my spine is covered in Tarlov cysts from ~6 epi's a year (often multiple levels with each round) for the last 12 years. I've actually been reading about a doc in TX who treats them & has had good results (most docs consider them a benign, incidental finding on scans).

I'll give the arnica a try. My pain is mostly nerve pain, but it's worth a try. The PM I was seeing only does epidurals. I asked before & he said he doesn't do facet injections anymore & he never did trigger point injections. I don't know what's going on with him, but I was dose-stable and functional for over 10 years & now I can barely handle basic personal hygiene, often needing help. I had started back to work after being treated for another disabling condition, only to find 2 weeks later that I was losing my pain meds & PM suggested I reapply for disability under a new diagnosis. He said it's better to stay in bed 22+ hours a day than to be on pain meds & working. I've already developed sores and am so miserable. I just want my life back.

Please don't get any more epidurals if you have Tarlov cysts. I just had a phone consultation with Dr Feigenbaum in Dallas. He specializes in Tarlov cysts. I've had severe back and tailbone pain for 7 years. Most doctors will say that the cysts don't cause problems but they do in some cases. I have 4 cysts. They are pressing on nerves especially on my right side. Not only do I have pain but it is causing weakness in my right leg and pain down my leg into my foot. The cysts are also eroding my sacral bone. I am having surgery this summer. I'm just waiting for a date. Look up Tarlov Cyst Foundation ". There is a lot of information. If you look under doctors you can also find the surgeons name. He also has a website and you tube videos explaining Tarlov cysts as well as the surgical procedure.