Having been asked a number of times about the pain of muscle atrophy, I
decided to answer in a blog post in the hope of helping others. Bearing in mind
- I am not a clinician, this is my experience and assessment of muscle
atrophy.
1. First, there's muscle atrophy that goes on beneath the surface that is not visible to the human eye, which I call weakening.
2. Then there's the flab/ rippled,
Sharpe look, which I call wasting - denoting a process.
3. Then there's the gaping hole, which I call loss - because it's finally gone.
The first stage is discomfort, for sure.
The second stage has an added sensation of movement that feels like rolling or rippling.
The third stage is a deeper, more intense pain; like bone on bone or metal to metal. The picture it evokes in my mind is that of a car when the breaks wear out.
Just as everyone's RSD pain is different, I think that may be true of atrophy also. For example, I think the more frail one is, the more painful it could be.
I would welcome your thoughts, whether clinical or practical.
Very truly yours,
An expert patient
Jane,
ReplyDeleteAfter our discussion early this morning, and so very little written in the professional journals on this stage of RSD-I am truly grateful to see this. I think that my former collegues saying that this stage of RSD is "less painful" or that it somehow that "pain improves?"
They haven't watched the wasting of their own body, they haven't watched as circulation shuts down, as sores and wounds take their own sweet time to heal, and that has its own pain. I think that you and I agreeing that the pain certainly does change in this stage of a disease to me even professionally feels a bit out of the book of Job.
I truly feel that the level of pain-it can't be measured. I have grown weary myself of having former collegues ask me to rate it with a number-I see that as a pointless and fruitless mission. And since few things about this are even written about-it will always be disturbing to me how little research goes into those of us who are atrophic, or as I tend to say-alive and well in Stage Four.
It clearly has gone nowhere. To learn that the four stages at least once identified can in some places be fount now in three is nothing more than a re-write. But to learn things at this part? That there are love, forgiveness, and God's beauty, I think it comes to me as it does not matter what this life puts us through.
I think for me, the pain changes. I can't say for sure that it gets better. I think that much I can agree is in fact the case.
As a patient. And a clinician.
God bless & thanks for the honest summation you too have written.
AJ
One final thought:
ReplyDeleteThe hardest part about this stage of the illness is that once you lose it, it's like the memory in someone with Alzheimer's-and you looking at the hole.
It isn't coming back. Whether as you are 39, 79, it doesn't matter. It is as you say, gone for good.
God Bless you,
AJ
Yes, the hardest part is that, once it's gone, it's not coming back AND, since atrophy limits your movement, the more atrophy you have the less movement you have. From what I'm told, that could ultimately render the patient immobile.
DeleteAJ - For me, the burning pain did settle down over time (as I read that it would). But then the secondary issues came into play, making the relief short-lived. Issues such as: Ulcers, fungus, GERD, vision loss, hearing loss, etc.
DeleteJane,
ReplyDeleteOne of the things I developed early on was the hypersensitivities not just to the pain receptors, but it's known as hyperacuasis. The sounds I hear at even low pitches are extremely painful and trigger hearing loss in other decibel ranges. The treatment is pretty simple, and cheap. The colored noises put together (about 2 hours of play per day on low volume) and in the middle, nature music, rain, storms, forest sounds, etc, in a play list from iTunes or Amazon (and Google) all provide desensitization.
I think we both agree on the pain changing-the burning for me isn't as bad as the allodynia. With fibro, it's pins and needles. For me, it's sort of like thinking pins and needles would be a relief. That's why I too, prefer someone avoid touching me.
The mobility is a tough issue. I think my physical therapist early on was right. "Let pain be a guide, but not a slave and master" I also have to be realistic about what's tolerable. And the hypersensitivity has me checking into ketamine but that's also the nerve damage to my face.
The pain of loss can't be discounted either, Jane. I think though, if we're medicating that-it's one you can't. But when we spoke the other night, I do feel that medical science has failed on this one, in all honesty. I'm sorry I say this as a former clinician, but I also would not work in the field at this point. The lack of compassion not just to myself but others too.
However, I think that losing muscle, having wasted muscle, shows that the progression may not slow up the pain, but change it, I believe it does, on a physical realm, and a personal and spiritual one.
God Bless,
AJ
Thank you so much for writing this. I have been suffering since October 2004, and this is the first time in all of my research I've seen the "rolling muscle" feeling put into words. When it first began, just after RSD/CRPS started, it felt as though an enormous vein or blood vessel was snaking its way up my leg! It's nothing I could ever describe, so I never have- not even to a doctor. I'm afraid we all do that with so many of our symptoms. They are so unspeakable and too difficult to put into words.
ReplyDeleteAs far as atrophy, where my RSD is worse, the area is "shriveled." Not even from lack of use, but from the disease dystrophy itself. At 22 years old, my orthopedic did a second x-ray only 2 months after onset. He compared it to the xray of my sprain, and said my bone was as atrophied as an immobile 80 year old on one side, and healthy on the other. The disease ate away that much after only 2 months! Your description of #1, #2, #3 are spot on, Jane.
If I may add to the informative conversation above, my pain has also changed. It has spread and become much more debilitating, but the type of pain I experience is much different. As Jane said, there are so many more comorbidities and nasty symptoms which can develop over time.
Even if we begin in the same place, CRPS/RSD never travels the same path in anyone.
This article and comment section was such a comfort to read. God bless you, Jane.
Thank you, Mary, for responding to this article on atrophy. I'm glad you found it "a comfort to read" and I appreciate your input. Like you said, not all atrophy is from lack of use. God bless you, too, Mary! Those of us with health issues need extra grace.
ReplyDelete