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pain is so unbelieveable

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Old 09-04-2009, 02:45 PM   #1
Join Date: Jul 2009
Location: Eau Claire Wi.
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mlarso HB User
Wink pain is so unbelieveable

I have been diagnosed with RSD and drugs don't really help. I have had 2 ganglion nerve blocks and will be having my third one next week after the holiday. I am so scared that they will never get my pain under control. The first block worked for about 5 weeks with great pain relief and then came back with a vengence. I had another one about 10 days ago and it didn't do a thing. Like I said I am going in for another one next week and if it doesn't give me any relief - what will become of me? I can't just take pills and get no relief from them. Does anyone have suggestions as to what else there is to try. Hydrocodone isen't doing anything, tramadol (useless) and other than that they have me on lyrica, which again doesn't do much. What do people do with this hellish pain? I have been dealing with this since Feb. of this year and RSD has no cure so I will have a long road ahead since I am only 53 yrs. old. Any suggestions would be very much appreciated. Thanks

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Old 09-05-2009, 01:07 AM   #2
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Re: pain is so unbelieveable

I'm so sorry about the pain you're experiencing. Personally, I have found the Fentanyl patch works great for me. I can certainly relate to your level of pain - I also have systemic lupus (in addition to spinal issues) and most mornings getting of bed was a challenge and just walking downstairs hurt considerably. And waiting for my pain medication to kick in always seemed to take forever. I have just recently started pain management myself and I kept resisting it, but honestly I think it's the best thing I could have done. I'm on a very low dose of the patch 25 mcg per hour and it works wonderfully. I change it every 72 hours and I don't have to think about it the rest of the time. I also take Norco for breakthru pain and Soma for muscle spasms. However, since I've been on the patch, the number of pills I have to take is reduced substantially.

There are other long acting narcotics on the market (I don't have experience with other ones besides the patch), but there are many knowledgeable people on this board that will share their experiences and knowledge.

~ Fiona Jo
080807-Cervical-Stim~071707-ACDF-C5-C7 w/instrumentation/bone graft~'07/06 Lumber instrum. removed 05/04-Fusion(DDD/Collapsed Disc L5-S1)08/99-Microdisectomy(Herniated Disc) ~Lupus/EDS,Migraine

Last edited by Fiona_Jo; 09-05-2009 at 01:08 AM.

Old 09-05-2009, 05:57 AM   #3
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Re: pain is so unbelieveable

Hi Mlarso and Welcome.

It may be that hydrocodone isn't strong enough for the amount of pain you have. There are a lot of different options available besides the ones you have tried. I think I would tell the Dr. that the hydrocodone isn't keeping the pain levels down at all. You may have to try several combinations of medications before you find the right one for you. Everyone responds differently and what works for me might not work for you. In general, people end up with a long acting pain medication, a short acting immediate release medication for breakthru pain, and one (or more) of the many medications that are used to help with nerve pain. Sometimes it helps to keep a log of your pain levels, what activities make it worse, etc. A lot of people have found that it helps to have a family member go with you to your appt. They can tell the Dr. 'He/She is constantly in so much pain that he/she can't even xxx.'

I hope they find something that will help.


Old 09-05-2009, 09:15 AM   #4
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Re: pain is so unbelieveable

are you actually 'IN" a good pain management facility or are those blocks just being done outside(just being referred to one for ONLY the blocks) of that as far as you being treated overall by a good PM doc? who is in charge of rxing your meds/narcotics?

honestly? the fact that you even got THAT much real solid relief with that first block is very encouraging actually. many of us with RSD will only get the duration of the block pain relief then it all comes back, but usually will at least lessen the overall intensity of the burn some for me on a good day, but nowhere NEAR what you achieved. one thing that could have actually happened with that second block is the doc simply missed that stellate ganglion when he injected? that unfortunetly does happen with this type of block since they have a hard time sometimes even finding that stellate that just sits next to the trachea. they know thay have hit it when you actually develop what is called a 'horners syndrome" in an eye? the lid gets droopy and the pupil really constricts down to almost pinpoint. if you did not actually experience the horners upon having that second block done, it just could have not hit it. thats just one possibility here since you just really seriously achieved an amazing level of response from that very first?

i would just wait and see how this next one goes. it is usually much more effective to do a whole series vs having just one done? i have had many done down in my low back in that symp chain level for my knee RSD. i only have had the one actual stellate ganglion done in my neck when i first started at my PM. it was just to kind of confirm a Dx of what is called 'central pain syndrome' that i have in my left arm from spinal cord damage. he just wanted to make certain, since some of those symptoms are the very same with both syndromes, that i did not get mis Dxed by my NS with that central. since the block did absolutely nothing up there with my pain, we did know for certain that it was indeed central and not RSD.

the one really huge thing that i have found over the years in trying to really manage my RSD pain(espescially the hidious flares) that actually helps is my TENS unit. i have had sooo many really bad side effects from like every one of the anti convulsants and cymbalta i have tried that took away abilities(espescially the lyrica) that i just go with more of the 'outside' forms of treating this hell. lidocaine patches can also help ALOT with this crap too. just exactly where is your RSD located and what triggered it, do you know?

getting to a really good pain management doc who is just willing to try the long acting types of narcotics,i really do think may help ten times more than a short acting form of med,espescially somethiong as weak as vicodin for this level of pain. while many docs will tell you that narcotics just wont actually 'do' anything when it comes to RSD, i have personally found and if you go to the RSD site just a scroll on down from here too that many RSD sufferers DO manage to at least get some level of true relief with the right narcotics taken. i am on oxycontin for my other pain crap and i do know it also does help at least some(probably more due to the natural dissassociative effects that narcotics just have on the brain?)with certain pain parts or components that just make up my RSD. it is always worth at least a good solid try to see if this would work with the appropriate type of longer acting narcotics. a good knowlegable PM would just let you give this a try anyways. anything should at least be given a good solid try when our pain is just that bad. what you are on now just would not even be enough of a good "hit' with this level of pain this syndrome brings along for the ride. if it can even just take some of that overall intesity down it IS a success in my book. lowering overall intensities of any pain just makes it much more tolerable.

but DO go down to the RSD boards here if you have not already done so. the people there are really great and caring and very helpful too. you WILL be welcomed there. there are just many many peop[le there who also have found many different and effective ways of trying to manage this level of hell. i DO hope that next block gives you what you were actually able to achieve that first go round. that really was an amazing response you had to one symp block. at least treatment is being aggressively persued right now, and that really IS crucial in possiby even getting this crap to actually remit itself in some people. yes, it can happen with aggressive and early hits with those symp blocks. so there is always some hope there hon. please let us know how that next block goes, marcia
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

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