Secondary Progressives Community Group

For those of us who are beyond Relapse/Remitting. Dedicated to supporting others that are secondary progressive.

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oleblue 11/04/2011

I was just wondering if anyone can feel a change coming to there body? Recently I know something is changing and I can't put my finger on it. For example the new pain in my back and shoulder area, the sudden feeling good yet my body is in so much pain, the new fever I can't get to break all of the little things like that. The pain is of biggest concern as it is so different, I was blaming it on being plugged up and having to strain to be able to go and the pain that comes with that. Sorry for being so grapic but someone needs to talk about it and we don't have the most pleasant things happen to us. I know I have spinal stetnosis but once again the pain is different just like in the shoulder area. I take gabapentin for pain and 3 80mg of oxycontins a day and it is like that does not even touch tthe pain and that should have me in lala land. Any thought would be appreciated on the different pain or any other thing you may have felt before a change.
Thanks so much
Dave

deleted_user 11/04/2011

First of all, most people do not have body awareness. I think we as MS patients are more in-tune with our bodies and any changes that occur. The important thing is not to immediately blame everything on MS; always, at least, talk to your doc (neuro or otherwise) about anything new to get an actual medical opinion.

Secondly, I'd recommend to go to a pain clinic or center. There are ways, other than drugs, to counteract pain. If you aren't getting the relief from the meds that you once did, it might be a good option.

Dulcolax stool softener will help with that stuffed-up problem without screwing up your system.

Peace. Soon.

Phil

deleted_user 11/04/2011

I agree with phil, I know that oxy can start to actually cause in turn leading to u thinking u need more. Its how this drug takes ahold of people. It sounds to me like this is the "new pain" u speak of. I know this will sound inccorrect cuz u have real pain to treat, my advice would be to detox off it.
I do not know how you would go about doing that while maintaining your other meds, I know you can't go cold turkey. U should talk to the NMSS in your area and c what you should do.

Oh, and eating bran really helped me b regular. My Nuero suggested senocot and it made me go but I found with the bran it was ezer to go and softer w/o urgency. My suggestion bran flakes(I don't care for raisins). Dude bran ;)

deleted_user 11/04/2011

I agree with phil, I know that oxy can start to actually cause pain in turn leading to u thinking u need more. Its how this drug takes ahold of people. It sounds to me like this is the "new pain" u speak of. I know this will sound inccorrect cuz u have real pain to treat, my advice would be to detox off it.
I do not know how you would go about doing that while maintaining your other meds, I know you can't go cold turkey. U should talk to the NMSS in your area and c what you should do.

Oh, and eating bran really helped me b regular. My Nuero suggested senocot and it made me go but I found with the bran it was ezer to go and softer w/o urgency. My suggestion bran flakes(I don't care for raisins). Dude bran ;)

deleted_user 11/05/2011

I agree with Phil that MS patients are more sensitive when it comes to body awareness. It is important to not only see your neuro or specialist but to remember to see your regular dr as well because not everything is related to MS. Get a regular checkup each year to keep tabs on other health issues. I find that I have been so focused on my MS that I forget that I need to be aware of cholesterol, heart, etc. concerns as well.

As far as being plugged up and graphic...it is true that these are issues we find hard to deal with openly but need to find support with. I am already beyond the bran, Miralax etc solutions and I have to put on a glove and push on the right inside skin of the rectum to release the bowel. I found this solution on a National MS Society page several months ago. I talked with my neuro and she said that stimulation is part of the handling of the progression of this disease.

I am concerned about the time coming when I will have to use a catheter. Anyone else at this stage?

Again, I am thankful for this page to talk reality with other MSSP people.

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