stump muscle pain

[Ann]

Have been an amputee for many years, about three months ago had revision amp surgery, which went well.  A couple of weeks ago I got fitted with my new prosthesis and after sailing through using the pam aide, physio etc., using the new prosthesis caused pain in the lower back part of the stump (am using a PTB with Liner).  I have been told this is normal and is muscle pain and will wear off and to keep going with the prosthesis, am taking it easy but at the moment I am not getting much improvement, am actually walking less on it now than I was when I first got it and the whole leg has become very sensitive and painful to walk on, plus I am also now getting these pin prick type sensations, which I guess are the nerves kicking in. So wondering if anyone else here has experienced anything like this and if so, what they did about it and how long it took to settle down.

[cherylm]

Ann, I'm just starting to break in my latest prosthesis...it's felt pretty good right from the start, but I have had some days (sometimes multiple days in a row) where I had muscle cramps and pains when standing/walking. But it is settling in nicely and I'm having fewer and fewer problems days. There was a noticeable change in my liner at the same time as my new socket, and I think that may have been part of what I needed to adjust to.

The fact that you're walking less as time goes on does sound like it could turnout to be a problem...I hope I'm wrong about that and that you'll soon get to feeling settled in your new leg. Heaven knows you've been through enough for a while.............

[snarfler]

I suspect an alignment problem. See your practitioner and have him increase the PTB load. If I'm right, you will feel the improvement immediately. If I'm wrong I'll take you to lunch.

[Ann]

well I have had everything checked and they think the problem is with the fit of the prosthesis and not my own leg, which is a bit of a relief, as I was worried about the possibility of infection or the like. So I just have to sit it out now whilst the refit is arranged, which is a tad frustrating but know these things happen, so hopefully just a blip in the scheme of things.

Snarfler .... I think you are right on track about the "PTB" load (you have obviously been there and walked the walk as they say) .... so no lunch !!

[Deleted]

My (arm) stump never stops hurting,

[Ann]

sorry to hear that Jill, although I have just had a revision have been an amp for a long time and don't usually get pain problems except when the prosthetics are not fitting properly, so sorry to read that your arm always hurts.

My leg has settled down somewhat since I have stopped wearing the prosthesis, but it means I am once again legless and I am not sure when I will get the refit.

[cherylm]

Jill, wasn't your arm lost due to an accident?? Sometimes that can make a difference in pain levels. And sometimes things like heat, massage, and even simple distraction can help, if only because they can relax muscles and lessen pressure on nerves.

[Deleted]

Yes, crushed in an accident.  And yes, I seems to make a very big difference compared to   congenital or elective surgery amputations.

I also think it makes a difference that I was conscious.  It has to be a whole different experience to lose it under aenesthetic, even if you know it is going to happen.

I actually watched as a piece of the car squeezed my arm and had time to think quite clearly that if It was broken and in a cast, it would affect my piano playing, and then thinking that a cast on the elbow wouldn't be so bad if I could still use my hand.

And I can remember how the squeeze became a squish, and the blood oozing out at the skin  broke, and then the bone being crushed and my arm hanging by a thread of skin.

I think that seeing all this may make the pain worse, or at least more real.
 

[cherylm]

I think you're most likely right, Jill...I had a lot of my surgeries with local anesthesia plus "twilight sleep," and it was planned for, and...at that point...I was actually looking forward to losing the leg and getting rid of the pain I'd been in. There had been a lot done in advance to get me into surgery as close to pain-free as possible. I've had very,very few pain problems since then...and I really feel for folks who went through painful, crushing, unexpected accidents in losing a limb.

I once went through a fairly serious car crash, and it's amazing just how slowly that sort of thing seems to go. I can imagine the horror of being in that odd slow-motion existence while a part of you is being so terribly injured. Sometimes pains can fade with time...I hope that happens for you!

[SteveInMd]

Nov 6, 2014 13:45:31 GMT -7 @jill said:

Yes, crushed in an accident.  And yes, I seems to make a very big difference compared to   congenital or elective surgery amputations.

I also think it makes a difference that I was conscious.  It has to be a whole different experience to lose it under aenesthetic, even if you know it is going to happen.

I actually watched as a piece of the car squeezed my arm and had time to think quite clearly that if It was broken and in a cast, it would affect my piano playing, and then thinking that a cast on the elbow wouldn't be so bad if I could still use my hand.

And I can remember how the squeeze became a squish, and the blood oozing out at the skin  broke, and then the bone being crushed and my arm hanging by a thread of skin.

I think that seeing all this may make the pain worse, or at least more real.
 

Jill,

My heart aches to hear of your story.  There are a number of ideas I have to share.  I have no idea if any of them will be of help, but there are surely others out there with comparable stories, and one or more ideas my help someone -- thus a post instead of e-mail.

As a retired physician, I think I can suggest a few things for you to explore with your doctors/specialists without being accused of practicing medicine without an active license.  Here goes:

The trauma you experience would precipitate PTSD in lots of folks.  Proper mental health care for this is often hard to find, and often not done well by practitioners without specialized training and experience.

Chronic pain is a devastating problem.  There are LOTS of things you can try and explore that perhaps haven't been suggested to you yet.  
-- your symptoms seem suggestive to me of a condition called "reflex sympathetic dystrophy."  It's semi-rare, and often mis-diagnosed.  Treatment is rather different from other kinds of chronic pain, so I'd suggest reading up on the condition and treatments at reputable web sites.
-- many kinds of pain respond quite well to TENS treatments.  You can actually get one OTC on sites like E-Bay and Amazon at remarkably low cost.  Getting insurance to cover a costly prescription-only unit can be a huge challenge, but that hurdle might not be necessary.
-- many kinds of neuropathic pain respond to topical capsaicin gel.  Again, this is OTC and fairly reasonable in cost.  Follow directions carefully, as wiping your eye after applying the stuff can be very painful.
-- it really should be pointed out that many people with neuropathic pain have gotten relief with medical marijuana.  Whether that's feasile/legal depends on where you live.  I'm NOT suggesting doing anything illegal, of course.

I hope something here may help.  Best wishes,

Steve

[Deleted]

Steve,

Many thanks for that. I will follow up on these ideas. I would appreciate any other ideas, too. Your time is valued and appreciated

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