Pain (rant)

[Mike in Maine]

Do any of have any suggestions for dealing with the pain caused by the spasticity (pulled or torn muscles), without resorting to opiates. They don’t do a lot in the pain department for me (just don’t work) and the side effects (systems clogging) are highly undesirable. It seems I’m in pain most days, not your little aches and pain, but down right hurting (mostly muscle stuff, some cramping). I’m exhausted most days from the drugs and the effort it takes to live life with a MND, the pain seems to suck whatever energy that is left over right out. Sorry guys I know I do a lot of whining on the forum, but the Doctors just look at you crossed eye and make feel like your nuts. That leaves the loved one and bless them they try so hard but they don’t have the experience or training, what they learn is by trial and error. You know sometimes, let’s make that most times it seems that they are hurting as bad as we are or worse as they watch us struggle to do things. They think their hiding it, but you can tell. Boy really went off subject in this post, but if I’m whining too much let me know. I just figure you all are living with the same thing so you may have some tried answers. Maybe I should just shut up and watch an old WWIII war movie. (ref. to a prior post)

Mike

 

[Tokahfang]

I am also pretty opiate immune, as well as being resistant to many other classes of pain drugs. In addition to spasticity born muscle pain, I also have a lot of arthritis and that is exascerbated by working too hard with spastic muscles. To some extent I have just learned to live with the pain, but there a few things that help.

Constant, low dose over the counter NSAIDS keep the inflammation from getting into an out of control cycle.
"Back door" pain meds that are designed for other things help some folks, and are worth trying, and they work for me as breakthrough pain meds - the kind that were designed to be antidepressants or some other kind of drug (Tramadol, Cymbalta, Neurontin, etc).

Mostly, though, over the years the most effective thing I found I could do for the pain was to stop doing so much mechanical damage by trying to do more than I should through the spasticity. My wheelchair, even the first and junkiest one, did more for my pain in the long term than anything else. Once I graduated to custom fit to my needs wheelchairs that was especially true, and once I became a quad the same thing happened with my power chair. I also had more energy when I wasn't trying to do things the ablebodied way. Learning to do things within your limits can be hard, but it is very rewarding.

 

[MaxEidswick]

>Do any of have any suggestions for dealing with the pain caused by the spasticity (pulled or torn muscles), without resorting to opiates. They dont do a lot in the pain department for me (just dont work) and the side effects (systems clogging) are highly undesirable.

opioids have the same effect for me -- itchy nose, plugged up. Make sure you load up on fiber, i drink gazpacho, and/or stool softener.

explain the situation to your pcp, if they can't help, ask for a referral to a pain specialist. don't ask, don't get


>It seems Im in pain most days, not your little aches and pain, but down right hurting (mostly muscle stuff, some cramping). Im exhausted most days from the drugs and the effort it takes to live life with a MND, the pain seems to suck whatever energy that is left over right out.

i can relate, but only have real pain in top of left hand



>Sorry guys I know I do a lot of whining on the forum...Boy really went off subject in this post, but if Im whining too much let me know.


whine away, wine may help

 

[bigmark1954]

Mikey.......welcome to my world. I have numerous orthopedic issues, and muscle pain from overdoing everything. I find that Aleve helps me cope with muscle pain. Opiates scare me because I have had several friends over the years that have gotten addicted, and I don't want to go down that path. One thing is for sure....if we were horses they'd shoot us.

 

[MaxEidswick]

>if we were horses they'd shoot us.

Ditto that!

 

[skipper66]

I have been having lots of pain because of rotator cuff tendonitis and a frozen left shoulder. The presciption drug Tramadol worked really well but I could only take it at night because it is pretty potent stuff. Over the counter I have found that Aleve works the best. I don't know if it would help or not but you might try using a heating pad and see if it helps at all. So sorry you are going through all this. Hope you can get some relief soon.

 

[MaxEidswick]

>The presciption drug Tramadol worked really well but I could only take it at night because it is pretty potent stuf

that what the vets use after spaying/neutering, the dogs never complained ...

 

[Chris3274]

That is funny

 

[Chris3274]

I didn't mean your pain is funny but Max's response.

 

[MaxEidswick]

>I didn't mean your pain is funny but Max's response.

fwiw, I sprained an ankle and tried some of the left over tramadol and it did not help ...

 

[Kosmoskatten]

I was at the hospital last week for a meeting before the biofeedback research group I am in is starting. One member of the group told me he had actually bought one of those fake weight loss TENS-pad machines off TV-Shop and used it on his sore spots when he got pain from spasticity.

He told me it actually relieved him quite well, especially on his inner thighs. And it actually makes some sense, since TENS-machines are used in medical care as well for heat and muscle stimulation. I haven't tried this myself though.

But it actually depends, some people get worse when the muscle is warmer, and then thermal cooling packs can be considered.

 

[pearshoot]

many years ago they came out with a hair restorer.....those that bought it swore they grew new hair, not because it did they just didn't want to admit they had been duped.....could this be the same situation........

 

[Suzannah]

I've had bad bad bad chronic pain since I was 14 (35 now). It all makes a lot more sense now in light of knowing about the spasticity issues.

Some of the nonmedicine things I do regularly to try and keep it in check are:

Yoga (you can find videos online for gentle, seated-based yoga. Keeping range of motion has helped me a lot)

Massage

Heat from heating pad

Epsom salt baths

Castor oil pack on legs (just tried this one recently. Felt really really good. Directions can be found on google)

Tens unit that I got off of Amazon. I use it on my legs and shoulders. It was about 200$.

Incidentally, I should probably go into weatherforecasting, because I always know 24 hours in advance of when it is going to rain. The change in atmospheric pressure causes terrible pain in my legs, and there's nothing that seems to mitigate it.

--Suzannah

 

[Dutchie]

Sorry to read this topic.. I am not diagnosed yet ( do have hyperreflexia etc) and that pain is something that I have to deal with for about 6 years. I noticed that knowing of spasticity helps me a little bit to understand the pain. I always try not to sit too long ( the pain in my hamstrings is terrible ) The weird thing is that it seems like I can not get this pain under control. When I used diazepam the pain was still there. I have read a lot about (gin) tonic. The quinine in the tonic could help against muscle cramps. I have tried this out half an year ago, without any good results. I think you should drink a lot or use the gin to get something out of it. I will try it again, because I really have read a lot positive comments about it. I think moving (although it's hard) also helps a lot to keep your muscles as flexible as they could be.

Take Care

 

[JimInVA]

Mike,

Don't ever think that asking for help, here, would put you into a "ranting, complaining too much" category. Such category does not exist. I've used these forums to ask questions for my PALS. I treat these types of issues as challenges waiting for a solution. The first thing we'll attempt is to find a way to "make it go away". Failing that, we'll search for the means to "minimize what you can't make go away". And sometimes, unfortunately, we simply "deal with it while searching". When my PALS was being treated for CIDP, she was given a TENS unit. I don't know if this is something that might help, but wanted to mention it. MY PALS also prefers to not use the pain meds because of the resultant constipation. So, for the moment, we're doing more and more movement of arms and legs. It hurts, but I start easy and slow... and stretch, push and pull... with ever so slightly more pressure. Sometimes we'll have to take a break and come back at it again a short while later. This has provided the greatest help for where we're at in her progression. And for some, in states that are more progressive, I've heard that medical marijuana can provide a level of relief not found otherwise.

I hope you find something that helps...

Jim