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scottm

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The neuro says he wants me to wean off the Cymbalta and see what happens. My fatigue level is off the scale, I just want to sleep.The medication has been helping with the pain but the fatigue is a real issue. Sleep study when I'm weaned in a month. I have to admit to more than a little concern about the level of the pain when it starts ramping back up. Steady state now is 4-5 with peaks to 7-8. 10 for me would be a bear eating an arm... We wait and see, if it gets crazy I can always restart and take the trade-off of fatigue.

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Wow lots of positive vibes your way Scott! I thankfully don't have CPS but I know that those that do have a lot to deal with. I couldn't imagine. Now on the other hand I have to take a cocktail of psychotropic medications for the severe depression, anxiety with panic attacks, rumination, PBA...get the picture...I'm crazy lol. I am terrified of having to be weaned off my meds one day...just drive me to the loony farm. 😵🤐

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Oh boy Scott good luck. fingers crossed for a miracle, maybe the pain won't ramp back up. the thing with CPS pain is that it's a bit like phantom limb pain, so it's possible your brain has worked it out and it won't come back.

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I also trade fatigue for relief. BEST wishes that you find solutions. This is awful to live like this isn't it.

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Scott

My new Dr took me off 10 mg of Lipitor, said there are two things most Dr's don't know

1. Reports it can make you dizzy

2. It can give you mussel cramps / pain

Within a few weeks the mussel pains were almost gone, don't get me wrong I still got them but before they were at a 6-7 and now there at a 1-2 much better but little luck with being dizzy part, oh well 1 of 2 is still better than nothing, he did say there trying to help prevent another stroke and put me on 10 mg of Crestor , I did that for just about a week but felt sick top my stomach and called and told him I wont take them any longer. Its been about 3-4 weeks and I feel much better.

I was on 200 mg Cymbalta in the beginning but that was to help reduce the swelling on my brain after the stroke and after a few weeks it worked so I was weened off of it, it played games with my sodium levels and that also leads to dizziness, I just cant win but I  cant stop trying.

Hang in there and never give up

Ed

 

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All the best, Scott.

My fatigue is sky high at the moment. Hate it with a passion. 

 

I have no CPS.

 

To imagine something worse than fatigue that in order to get rid of that, you are willing to keep fatigue...well I can't imagine. 

 

I hope that eventually you can find a tolerable solution. 

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Well, the pain is beginning to ramp up while the fatigue declines, but I have a month to go on this half dose until I am able to stop completely. Interesting that my thinking is getting clearer already it seems. Eventually I'll end up with a Hobson's choice of pain or side effects. Right now I wake up with my leg, arm and face burning, take 30 mg of cymbalta and 4-6 hours later it is better controlled until about 8 PM when the cycle starts again. I hadn't expected it to all restart so quickly.

 

We troop on and deal with it because it is the hand we were dealt and we don't get to fold nor did we get a vote. It just is so we cope and lean on our friends for support. Thank you my friends, it really does help to know you are here.

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You really are in a catch 22. Very glad the fatigue is subsiding. 

 

Was hoping pain would stay away a little while longer though. 

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Oh the "joys" of being on the medication roundabout. Fingers crossed you find a better fit with the next candidate

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Scott, so sorry you're having to go through this. And, yes, we are with you always.   Becky

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Sitting here at 2 AM because my leg and face have decided to exercise their ambush predator skills. One of the advantages of having been a caver, pain is an old friend, not one you invite in but familiar.

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I'm so sorry. Has your neuro suggested something else ?

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Right now it is wait and see but perhaps a trial with effexor next. Depends what happens when I completely discontinue with the cymbalta.

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My doctor prescribed gabapenton for pain. I had grogginess the first three days. The pain seems to be less or I just think it is!

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Janet pain is about perception a lot of the time. They still don't have an objective measure for pain, that's why the hospital etc. ask you to rate pain on the 1 to 10 scale. Who cares if it's "less" or "I just think it is!" it helps you. So long as you are finding the side effects manageable it's a solution for you.

 

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That 1-10 scale is rigged...

 

When I was pregnant with my daughter I had gall stones. Worst. Pain. Ever. (For me, obviously)

 

I had such a high pain threshold after that, I actually feel asleep during labour!

 

So when they ask me at the hospital etc about pain these days, if 10 is gall stone pain, most other things would be like 2 or 3 tops.

 

If CPS is a 10, then some things that should be like an 8, must be -3 for most!

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Very true Janelle. Thos is why the ambo and/or ER people give you "the look" if you say 10 and you can still talk

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Exactly Heather!

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My pain level is often like now about a 6 with spikes to 7 or 8. My doctor once asked me what I would consider a 10, a bear chewing a limb off for me. For others it could be wildly different, it is a function of your life experiences and attitude to a large degree. My past experiences required me to be able to stand outside  discomfort and continue to perform at high levels.

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That's it exactly Scott. I can't tell you when discomfort becomes pain. But it appears my pain threshold is pretty high. A couple of times now the doctors have written me up for real pain meds when in hospital and I have yet to experience pain where I thought I needed it. The nurses made me take it the first night after my gall bladder surgery because I was not breathing fully but I wasn't really aware of pain even then. I was just automatically compensating for discomfort. Mind you I could feel the difference once I took it.

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So, I'm completely off the cymbalta for a while now. I am very aware of the effect it had, right side of face burning, right arm stings like a bad sunburn, right leg alternates between ice/fire and ache. Woke up this morning when I rolled onto my right side, not sure I want to do that again soon which really sucks because that is the side my wife is on.

 

But there is good with the bad. My mind is free of the fog, my thoughts are clear and I am more aware of my surroundings. Also the non-stop fatigue is fading. I'm still tired but in a non-drug induced way if that makes sense. I also remind myself regularly that regardless of how it feels, there is no damage to my body and it is all an illusion caused by a signal processing error.

 

Now I continue to wait and see if it escalates and if so, how much. If someone asked me what my cutoff is for dealing with the pain is, I guess it is like pornography, I can't define it but I'll know it when I see it. I'll wait a couple weeks then update the docs. My neurologist told me he is pretty much out of pharmacological tools to try.

 

Be the 🦆

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Hi Scott, if you are out of pharmacological tools you might want to investigate the NOI techniques. NOI is based here in Australia and their researchers understand about Stroke pain. 

Their techniques are not quick fixes, but are designed to rewire your brain.  My neurophysio is one of their clinical teachers, and I consider it at least partly due to his efforts that I have not developed CPS at all.

 

Have a look at their website http://www.noigroup.com/en/Home and look for their videos on YouTube if you can't find a local practitioner.

Good luck with it

-Heather

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I have a daily struggle with CP's It's so hard to explain! It's burning, tingling, aching, soreness, numbness,and sometimes it hurts if someone even touches me on the left side!! I know it sounds kind of crazy, but that's how it feels to me! I'm trying gabapentin and elevil! I can't really tell if it's helping just yet, but I'm hoping!!

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4 hours ago, Myjade said:

I have a daily struggle with CP's It's so hard to explain! It's burning, tingling, aching, soreness, numbness,and sometimes it hurts if someone even touches me on the left side!! I know it sounds kind of crazy, but that's how it feels to me! I'm trying gabapentin and elevil! I can't really tell if it's helping just yet, but I'm hoping!!

 

It IS hard to explain the feeling to someone who hasn't experienced it. I hope you find relief!

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