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Has anyone here just had their pain STOP...?
4 Replies
SofaGeorge - February 24

This is going to sound like a truly odd post, but I need to see if other people here have experienced this - or if something unique is actually happening.

I know also know this may sound like an odd question especially given how severe my pain issues have been this last year... and the VERY high level of narcotic pain killers I am currently prescribed, but recently I've noticed a progressive phenomena. Simply stated - almost overnight my pain seems to have stopped. (I need to qualify this that it stops for several days... but then I do get walloped again occassionally... but this is following three years of increasing pain and the last year the daily pain has typically verged on the unbearable. I had to stop working in Sept. because the pain was so severe I could no longer go into the office and work. I hurt so badly I couldn't even focus to read... and I walked like a waddling duck most days.) I'm still relatively new to chronic pain management... so I don't know if my recent phenomena is typical to others with FBS. That is why I want to ask if this is a normal phenomena or highly unusual.

Background - I have severe degenerative disc disease in my neck. I've gotten various spine and pain doctors to tell me everything from "I am stabilized and it won't get worse" to "I will have to have surgery within 5 months."

There are 6 discs in the neck. I've already lost 4 and am losing the 5th. I also have bone spurs.

The unbearable pain has always been in my neck. There is pain in the rest of my body in places, but my neck has always been the point that puts me in tears. Oddly it responds much better to massage therapy than opiate pain killers - but I have also always been keenly aware that my pain is systemic... not just in my neck (but I pretty much stopped discussing this with doctors because the neck issue is the only one that is unbearable. But, I do feel it in my whole body... especially I feel a weird, uncomfortable feeling in my ankles and hands. This is what led my current family doctor to suggest the possibility of fibromyalgia... and this began our investigation of FBS treatments outside of just pain medications. (He also started me on a supplement called Juice Plus... and I don't want to "plug" a health supplement, but since I don't know what is causing my sudden improvement - I will even mention that as my only new health supplement.)

When I wake up in the morning, I am typically stiff as a board until the pain meds kick in. Finally, I started just setting the alarm for an hour before I get up... taking the pain meds... then sleeping another hour while the breakthrough pill kicks in.

Recently, one very insightful doctor listened when I told him the pain was all over my body... especially when the attacks were at their worst. he put me on a drug called Nabumetone... and overnight the results were fantastic. Prior to this... pain killers had limited effect. With Nabumetone... the pain killers then seemed to work MUCH better.

Currently my program is 80 mg oxycontine at 6:30 am... 80 mg oxycontin at 2-3pm... and 40 mg oxycontin at 9pm... with 4 15 mg oxycodone a day for brakthrough, 4 500 mg Nabumetone a day, and typically 2 10 mg diazapam a day for a muscle relaxer.

One of my doctors suggested that possibly the reason for the systemic pain was that along with the degenerative disc disease... I may have fibromyalgia. I am currently working PR in Vancouver at the Olympics... so I have access to ALL of the top doctors at the Olympic medical center. They ran me through the tests and said that they felt I had a 100% probablility of having fibromyalgia (the only precursor I was missing is that I am male and 80% of people with fibromyalgia are female.) Of primary interest to the doctors was that fibromyalgia in men is primarily a stress related condition. Israel did a study of male soldiers and found that 47% of them with PTSD develop severe fibromyalgia. I have a lengthy history of both PTSD and c-PTSD. (c-PTSD is a condition most people haven't hear of. Bascially you survive a very stressful and abusive home life as a child and it is termed "complex" PTSD because it develops over a period of many many years.)

Because my doctors in the US had suggested fibromyalgia... I started experimenting with numerous treatments that help fibromyalgia outside of opiate pain killers (which only seemed to have a 50% effect on me anyway.) This included going into EMDR for the treatment of PTSD, several months of GH therapy (9 months of GH has cured many people with fibromyalgia) and now I am looking into a number of other treatments like cortisol therapy etc... Bascially - I'm trying to find a non-narcotic cure or effective treatment that will reduce the need for narcotic pain killers.

Then... something totally unbelieveable happend. I woke up one day a couple weeks ago and my pain was gone. I knew I couldn't cut my pain meds completely without suffering symptoms of withdrawl, but with the Olympic doctors supervision... I cut my pain meds in half with no problems.

Then... I had three totally pain free days.

I was just at the point of celebrating my new miracle... when the pain came back with a vengence. Fortunately, going back to my old level of pills immediately brought it under control.

Now I have a mix of very good days... and a few tough days... but for the most part I've been able to stay at half my former pain killers with no problem... and have felt like I don't need them at all.

Is this common in chronic pain management? Do you all have periods where you find yourself extremely pain free for extended periods of time... or is this something unusual?

I have been very hopeful that I can find effective treatments that will let me get off the narcotic pain killers completely... and I've been told adding the cortisol when I get back to the US can greatly enhance the GH therapy... but I also don't want to set myself up for a fool's paradise. If ALL chronic pain patients go through these miracle "good" periods... please let me know so I can help manage future expectations.

 

Canada17 - February 25

I would say the only thing "typical" about Fibromyalgia (FM) is that it is different for everyone.

What I mean is that what works for you may not work for every other person with FM and the way you suffer is most likely different than the way I suffer.

That being said, it is possible for your FM to go into "remission" for a few days, weeks, months, or even years.

I wouldn't say a precusor for FM is being female because 1) there are more women in the world than men, and 2) FM seems to be directly related to hormones (of which us women have to battle fluctuations all month long) which means men would experience FM differently. This all brings me back to the point that there is nothing "typical" about FM.

So basically, being a man just means that you would be that much more difficult to diagnose.

 

Noca - February 25

I feel pain free for maybe a few hours from time to time. But overall my pain never goes away. Maybe if I was on as much opioids as you I could, but I'd never be able to tolerate that dose. Might up my Fentanyl to 50mcg/h and my Dilaudid to 24mgs for breakthru on my next appointment on March the 1st.

 

Fantod - March 2

Wow - You've been through a lot. Based upon what you have described, I think Fibromyalgia (FMS) is a very realistic diagnosis. Personally, I have had a couple of totally pain free days (about once a year). I feel like I am having an out of body experience. I have degenerative disc disease (lumbar), advanced osteoarthitis, TMJ and a host of other issues that set off the FMS. Like you, after a pain free episode, it comes back with a vengence. Don't know why it happens, when it will happen or how long it will last. With any chronic illness, yo just have to go with the flow and hope for the best. Take care.

 

SofaGeorge - March 10

thanks all...remission seems to be the correct word for me

the pain came back, but it seems to be only 50% now which is great

 

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