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KimT

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PALS
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I went to Mayo today and met with a pain management doctor. He recommended my trying out their pain management comprehensive program. He has never had an ALS diagnosed patient in the program but has had MS. The program seems counter intuitive to what I imagine would be appropriate treatment for my pain but the pain I am experiencing is consuming me and taking my function away. It's a three-week program.

The Director said Medicare and my supplement would cover all costs except the hotel. Jacksonville is a two hour drive so a hotel and food would be my only expense.

I also talked to a PA who works there and told her my concerns about "strengthening muscles" and she said that the exercises I would do would focus on ROM and very light stretches with rubber bands. One of the key components is group therapy as relates to various areas of pain management, stress, socialization, etc.

Any thoughts? I've not had a full 8-hour day out of bed in months and the days look exhausting.

Right now I feel like I could do so much more if I could reduce the pain so I'm torn.

Overview - Pain Rehabilitation - Mayo Clinic

Here's the link to the web site describing the program. Also is a PDF of their weekly activities. It's 3 weeks.
 

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Are you saying you have to attend this 5 days a week for 3 weeks?

It looks massive, I would not have expected anything like this for a PALS ...
 
Yes, it's five days a week for three weeks. I told her it looked impossible. Much of it is group therapy as regards dealing with pain. She said some patients come to the program in wheelchairs due to chronic pain.

The ALS dx is what worries me but, at least, I'd be at Mayo. It is in their actual hospital building.

One of the reasons they recommended it was because I've had pain before ALS (fibromyalgia and MVA neck pain) and they think some of my current pain is not related to ALS.
 
Can you do the motel booking so that if you have to pull out you are not committed to the room for the whole time? I know that could be tricky as they could make you change rooms which would be a pain.

Are you going to be comfortable enough in a motel room at night after those big days?

I so want you to find some pain solutions, and I want to trust they know what they are doing, but I just feel like you need a plan B you know you can take in case it's too much.

Another thought is that if it is too much can you negotiate that you may need shorter days? Something like you may need a couple of hours in the middle of the day, or need to finish earlier. Anything that may make you feel like you can manage.

Another way to look at it could be that if a big day is too much, and your pain really takes hold of you - you are at a place where they can manage you, and can then see that you can't do the full days, or certain of the activities or something, and once enrolled in the program they may be forced to look at you more individually?

I've often found if there is a good solid plan B in place, it doesn't end up being needed, but if there is only plan A, it goes to crap. That dang Murphy fellow.

I can see their feeling about the pain you are experiencing being not just due to ALS and so the program may really help.
 
Kim, you can always stop mid way thru a day if necessary. I would do what is comfortable or helpful but not push it. Like Tillie said, being there will show them your needs....and they will be able to treat them.

I know massage hasnt helped you but for me I found a good fit. In four massages she has worked the fascia in my back,hips,and shoulders so my pain is greatly reduced. I generally need no pain meds and certainly not the narcotics they were trying to force on me. Maybe they will have someone who can evaluate what is the cause of the pain so you finally get relief.
 
Tillie & Steph,
Thank you both so much for being here for me. I know I've reached a point of desperation regarding the pain. My other health conditions make it so hard to try everything suggested (heart arrhythmia, GERD, etc.) I really was doing OK (considering) until February when the pain hit my back and ribs. This journey has been so very discouraging. First, with all the BiPAP issues, then Medicare actually denying the BiPAP and now trying to figure out why. Different doctors telling me different things. Losing my counselor after going off the college health care plan. Not having family. I guess I should have posted this in the rant section.
 
It is okay Kim. That is what we are here for��
 
No it belongs here, and you must let out the pressure in some way, and that is exactly what this forum is for.
 
I don't have any sort of reasonable advice to offer you re:pain- just wanted to let you know I'm thinking of you.
 
While I know your medical hx is complex and the causes of your pain are multifocal, Kim, intensive day hospital pain programs are not really designed for the likes of you and I'm not sure how actionable many of the modalities they teach there would be for you.

Moreover, they do not diagnose there, and I feel that the mechanism of how your back/rib pain became so much more severe is still an unknown. It may remain so, but it deserves focused attention, not group therapy. I also think you need evaluation in your home environment as to how your bed and chairs play into this and how they can be improved.

I would use that travel budget toward resources/experimental approaches closer to home. There are several emerging modalities that hold promise for mixed neuropathic/musculoskeletal pain, and that would give you the opportunity to avail yourself of local resources and possibly therapy in home as your illness progresses.

Just my 2 cents.

Best,
Laurie
 
Laurie,

Might you expound upon this?

"There are several emerging modalities that hold promise for mixed neuropathic/musculoskeletal pain."

Good luck to you, Kim.

--Suzannah
 
Thanks, Laurie. I've decided not to participate. Most of the "therapy" I've already tried and I know as much as anyone about biofeedback and nutrition. They are also dead set against massage and any type of water therapy which sent up a red flag.
 
Good for you Kim. You have the right to decide what to proceed with, and I know you gave it a lot of thought.

This doesn't solve your pain issues of course. Do you have a next strategy in mind?

I like to idea of someone who could work with you in your home, but I don't have any clue from here who that would be. To a degree here it would probably be an OT and PT working together?
 
There is a huge problem of lack of ALS knowledge in Daytona Beach and the surrounding area. If I lived in Jacksonville, I could easily find a PT and OT who could work with me. I've been to three PTs (all out of pocket before Medicare kicked in) and they only make me worse. I really believe it's because they knew nothing about ALS AND I already had some pain issues before onset. All the more reason to get working on the document. I just started working on the pain section yesterday. We had a local chapter meeting and I brought up the topic of pain when the Chapter leader said some members wouldn't get out and go to meetings and preferred to stay in bed. Almost every PALS in the room chimed in about pain being a big reason for inactivity and depression. One lady told us her husband (who never complains and has a very high pain threshold) woke up screaming from cramps.
 
Hi, Suzannah,
I am not forgetting this but want to make sure I am including what I wanted to in my answer -- a busy week at work, so that will be a couple of days.

Best,
Laurie
 
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