story about my pain management

Discuss different Pain Management Options; Medication options including side effects and Worldwide variances in names etc.

story about my pain management

Postby Cora » Fri Jan 07, 2011 9:59 am

[color=#8040BF]Onset PN/PFD/centralized pain in Oct 06 after years of athletics,nursing career and dog training. PT for two years with improvement, now go for tune-ups and pain management. Stopped Cymbalta, was on M.S. Contin, then Kadian, and briefly Methadone for pain management, now off those meds and pain is well managed with Buprenorphine. Followed my pain management specialist.
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Re: story about my pain management

Postby Faith » Fri Jan 07, 2011 9:49 pm

Good post Cora. I too have several doctors (4) and it's hard to keep up with all my records making sure each doctor has the newest updates in my treatment. I am glad you have found this new doctor and hope that she will give you great help in getting your pain better under control. I too suffer from other symptoms than just my PN pain. Some people think I have fibromyalgia, others just say myofascial pain. I was having some of the same symptoms you are experiencing (the leg pains, difficulty sleeping, waking up hurting so bad and feeling like I hadn't slept, and being exhausted in the afternoon though I hadn't done hardly anything) until I got on a high dose of Neurontin (2400mg daily). I still have those symptoms sometimes, but not to the same extent and am functioning some better. I can feel my Neurontin wearing off though so I feel like it's probably time to up my dosage or switch to another medication. Being a nurse I was so scared of trying Neurontin (and still am scared of Lrica :)), but I am learning that with this chronic pain you have to just do whatever it takes to get it under control or it will control you. Look forward to hearing how your appointment goes.
-11/08 vulvodynia began spontaneously around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manip
-Progressive widespread pain- central sensitization ?
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock, but pain is bilateral
-10/12 -bilat ischiofemoral impingement & labral hip tears/FAI
-12/12 - left FAI/labral hip tear surgery - no help so far
www.thepurposeofpain.blogspot.com
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Re: story about my pain management

Postby Cora » Mon Jan 10, 2011 7:39 am

Faith, i am a nurse too. how would you describe your quality of life these days, in terms of energy, pain, functioning? Have you been on a lot of other meds, or what other meds are you considering.
Thx
Cora
[color=#8040BF]Onset PN/PFD/centralized pain in Oct 06 after years of athletics,nursing career and dog training. PT for two years with improvement, now go for tune-ups and pain management. Stopped Cymbalta, was on M.S. Contin, then Kadian, and briefly Methadone for pain management, now off those meds and pain is well managed with Buprenorphine. Followed my pain management specialist.
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Re: story about my pain management

Postby Alex » Tue Jan 11, 2011 1:23 pm

Great post Cora,
Can you tell me what medicine are you using these days and how about your pain now?Are you getting relief from it or is it still like before???
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Re: story about my pain management

Postby Faith » Wed Jan 12, 2011 5:12 am

Cora wrote:how would you describe your quality of life these days, in terms of energy, pain, functioning? Have you been on a lot of other meds, or what other meds are you considering.


I would say on a quality of life scale 1-10, with 10 being the highest my quality of life average is about a 5. I am able to work as an RN on an ICU step down floor a few hours a week (like 4-8 usually), do most of my own household chores and run errands, and care for my 16 month old daughter and husband. But I am not able to do a LOT of the things I want to do such as exercise (other than light yoga/walking), have intercourse without pain (and therefore it is infrequent), sit (i don't sit at all other than driving and an occasional meal, max time 15 mins on a donut), and because I can't sit my social life is greatly suffering (I don't even go to church some weeks because I can't stand for the entire service). I know some people would say that's NO quality of life, but I feel I am being pretty resonable. My life could be SO MUCH worse. I can do most of what I NEED to do (other than work more), but little of what I WANT to do. My pain levels mostly stay in the 3-5 level. Most days my energy level is acceptable. I do have a toddler so I know I would be worn out even if I didn't have chronic pain, but as long as I get at least 8 hours of sleep I can accomplish what I need to most days (other than when I am in a flare of course).

Meds I have tried:
Amiptriptyline/Desipramine (both TCA's): I couldn't function on Elavil (way too sedating). I would choose Desipramine or Nortriptyline if I were you and wanted to try a TCA. They have less cholingeric side effects and for me Desipramine was much less sedating although I was still pretty drowsy on it and by 9pm I was out like a light (it did help me sleep). When I stopped it, my energy levels were much better. I had tachycardia on the TCA which is another reason I wanted to stop it (besides the fact it didn't seem to help my pain). My HR still is higher than it used to be and I don't know if it's because of chronic pain, lack of exercise, or what.

Neurontin: I am currently on this and have gotten the most relief from it so far (but that's not saying much with pain levels at 5 some days). I don't have side effects that I notice much from it and I still sleep well on it. I just need more of it. I take 800TID, but after 4 hours I can feel it wearing off usually.

Ultracet (37.5mg Tramadol/235mgAcetaminophen): I take this when I am in a bad flare and I never hardly take more than one pill a day. I have been on the same 30 pills since June if that tells you how much I use it :) It tends to increase my HR and I get a mild-mod headache with it. It doesn't do a lot for my pain, but it takes the edge off if it's a particularly bad day or I know I am going to have to travel or sit a lot or something.

Lortab 5/325: I have only used this a few times when I was in a major pain flare and before I got up to higher doses on the Neurontin. I have side effects with it though (nausea, headache, and anxiety) and it doesn't help my pain that much so it's not worth it to me.

Meds I am considering taking:

Lryica: I am scared of the possible side effects, but I think I may have to try this next. And if I am tolerating Neurontin without side effects I don't think I will get a ton of side effects with the Lryica other than maybe weight gain, but if it helps my pain and I can exercise more I can keep that at bay.

Cymbalta: I don't like the idea of being on an antidepressant (other than a TCA) and I don't have real depression problems, but literature shows some people have more improvement in pain when on Lryica and Cymbalta together so I will try it if need be (especially if my myofasical pain symptoms don't get under better control).

Birth control pills: My pain flares based on my cycle so it has been recommended by my urogyno pelvic pain doc to try birth control again. I am fearful because my pain started when I stopped using birth control and got pregnant so me and hormone changes don't go over well :)

As for Narcotics. I am not opposed to them and when all else fails if I need to live the rest of my life on them I will (as long as the side effects aren't unbearable). The main reason I have chosen to try other meds (like Neurontin and TCAs) before trying narcotics is because of the narcotics side effects and the possibility of physical dependence (although I know it is rare). As a nurse, I understand your feelings of "shame" for using narcotics. I wouldn't be too hard on yourself though. We have chronic pain. It is better to keep the pain under control than to let it get out of hand and if you need narcotics to do that then there is nothing wrong with it. You have one life and you want to live it to the best of your ability. God gave us the blessing of medication and I feel we would be foolish not to use it if it helps our quality of life. I have come a long way, just to let you know. When I first started having this pain I resisted any kinds of meds, haha (what an idiot :)). If I were you I would probably try some of the anti-seizure drugs/TCA's, but you have to do what you are most comfortable with.

Whew! Sorry to be so long winded :)
-11/08 vulvodynia began spontaneously around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manip
-Progressive widespread pain- central sensitization ?
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock, but pain is bilateral
-10/12 -bilat ischiofemoral impingement & labral hip tears/FAI
-12/12 - left FAI/labral hip tear surgery - no help so far
www.thepurposeofpain.blogspot.com
Faith
 
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Re: story about my pain management

Postby donstore » Wed Jan 12, 2011 6:35 am

Cora and Faith,
As I have posted elsewhere, I have found Lyrica to be quite effective with no side effects so far. It made it possible for me to have sex without major pain flare afterwards so I am quite fond of it. I can feel it getting between me and the nerve pain. Vicodin in the afternoon and oxycodone in the evening have been helpful as well with no significant negative side effects. Nortryptelene gave me insomnia and tachycardia. I am in healthcare as well (x-ray tech) so I have to fuction on a daily basis. All of these drugs cause physical dependence (neurontin as well) but the critical parameters are quality of life (minimal side efects) and pain relief. I believe that there is a big difference between people who use drugs for pain and recreational drug use. If your pain goes away, withdrawal can be managed by titating down the dosage and toughing it out for a week or two.Like all of us, I am determined to seek a cure if there is one available for me. In the mean time, it's all about what works for you. Thanks for sharing you experiences.

Don
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
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Re: story about my pain management

Postby Faith » Wed Jan 12, 2011 2:32 pm

donstore wrote:All of these drugs cause physical dependence (neurontin as well) but the critical parameters are quality of life (minimal side efects) and pain relief. I believe that there is a big difference between people who use drugs for pain and recreational drug use.


Very well said Donstore. Thanks for sharing your experience.

Cora, a couple more meds I have tried that I forgot to mention is Flexeril and Zanaflex (both muscle relaxers). I took 2.5mg Flexeril before bed a few nights, but I just couldn't function the next day on even such a low dose. The Zanaflex is a fast acting muscle relaxer for daytime use, but it too made me drowsy during the day even at 1mg that I didn't feel comfortable taking it and driving or working (which is when I really need pain relief). But I have a friend with PN who has had good results with Zanaflex. Everyone is so different when it comes to meds.
-11/08 vulvodynia began spontaneously around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manip
-Progressive widespread pain- central sensitization ?
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock, but pain is bilateral
-10/12 -bilat ischiofemoral impingement & labral hip tears/FAI
-12/12 - left FAI/labral hip tear surgery - no help so far
www.thepurposeofpain.blogspot.com
Faith
 
Posts: 695
Joined: Fri Oct 15, 2010 5:15 pm

Re: story about my pain management

Postby blasterkeg » Fri Dec 16, 2011 11:01 pm

This is a very good post. I am on Vicodin and Valium for the pain and the muscle spasms. For a while I felt terrible that I had to take a opioid to function every day. Now I have accepted it. This is my life and I know there will days were I may not need to use my full dosage but I am no longer ashamed if I have too.
pelvic floor dysfunction
abdominal bladder and penis pain and rectal pain
pain from sitting and car rides
shocking and burning pain though bladder and penis
testicle pain
Miss diagnosed forever with "just passing a kidney stone" or "Prostate infection"
Pain all the time. Sometimes better most of the time it is not
Physical therapy did nothing to help
Current Medication Vicodin and Valium when needed
GABAPENTIN 600MG 1 a day
3 guided nerve blocks done 1 more possible
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Re: story about my pain management

Postby Cora » Tue May 15, 2012 1:22 pm

Hi Everyone,
By now, I am sure I am a phantom member. I have been spending the past months since August dealing with my husband's illness of cancer. He went through chemo radiation and a major surgery and for right now it appears that he has "no evidence of disease". I apologize for not answering PM's during this time, I just never checked for messages. I did answer them yesterday but they may not be relevant at this time. I want to help others regarding some pain management issues. Last post I told everyone I was using a medication called suboxone ( generic bupenorphine) to taper my meds. I wanted to go off as I was having interpose w/drawal and some hyperalgesia. I also wanted to see what my baseline pain has been. Well, I am down to the very last step of the taper and using this medication has made a huge difference, and all the while it has managed my pain- even while my husband was ill and I had to drive considerably more. Now that I am at the very end, I am basically on a non-therapeutic dose. I do have more pelvic pain but it is very manageable and when I flare it calms down quickly. I still may consider trying amytriptiline. Most of what I do is manage by avoidance of triggers. The centralized pain is quite diminished. Now, once I am on zero meds ( I am on 1.5 mg which is about a 7-8 mg morphine equivalent ) we'll see where things are at. But to those of you who are considering tapering opiates for whatever reason- you might consider using this medication. It comes in a patch form that is approved for pain management- the name is Butrans. There are properties to this specific medication that make it more difficult to develop tolerance- so there are people who are on this for years who do not require escalating doses as with what are called full agonist opiates. So, life has taken some crazy turns for us- but i wanted to make sure I got back here for an update to help others. I was on the opiates for 7 years, always at a very low dose. I had a lot of bowel issues with the opiates and they started to cause more harm than good so that has been my motivation. I just state that because it's not any judgment about them- they helped me for a long time and then they didn't. I think of you all often and I'll check in now and then and report if there is something I think I can offer. I can't spend much time on boards these days as I'm trying to hold down the fort here with managing my own health as well.
Peace and healing to all of you,
Cora
[color=#8040BF]Onset PN/PFD/centralized pain in Oct 06 after years of athletics,nursing career and dog training. PT for two years with improvement, now go for tune-ups and pain management. Stopped Cymbalta, was on M.S. Contin, then Kadian, and briefly Methadone for pain management, now off those meds and pain is well managed with Buprenorphine. Followed my pain management specialist.
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Re: story about my pain management

Postby helenlegs 11 » Tue May 15, 2012 4:06 pm

Fantastic news about your husband Cora, that must be such a weight off. You have had such a lot to deal with.
Love and (((hugs)))
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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