pain n chair

[AKmom]

Its been awhile since I posted update here. I have gone through the first set of hoops the insurance has required, which was getting the doc to order me a new pwc and then going to a seating clinic. They recommended for me a much more complicated and expensive chair then what I was looking at purchasing for myself. I was thinking the Jazzy Elite 14 with legs the recline up. But they want me in something that tilts back and brings my knees up so I will be in 0 gravity.

I had gone to the clinic in my little Jimmie travel pwc that I have been using since 2011. Started spasming half way through the clinic, so they brought out a chair that will be similar to what they will order for me. They helped me transfer then reclined that thing up and back and raised my feet, knees and reclined back. My spasms disappeared after about 10 minutes (and my taking baclofen while I was still in my own pwc). The 0 gravity feature helped with taking the pressure off my aching hips. I just hope my insurance okays this chair for me!

Have any of you been having severe pain after standing for short periods (5-10 minutes at a time with 15 minute breaks in between) throughout the day? I am talking more than just the uncomfortable pain as if you jogged 50 miles. This pain is radiating and every-so-often a sharp pain will grab any muscle in your legs and shoot through that muscle, then be gone. My pain level in my legs have gone up to excruciating (from a 5-6 to a 8-9) all day and I am taking pain daily now (at least once a day but sometimes more if I just cannot get to sleep cause the pain is bad).

The people at the seating clinic, think that if I had a better chair, then I could use it more and be more comfortable and lower my pain level. I am starting to think they might be right, but I don't want to be a in pwc 24/7. I now have visible atrophy in the muscles that were twitching almost all of last year. That is another concern, but I am thinking that might be why I am in more pain. The muscles I have left are just moaning more for having extra work cause of a few muscles have packed up their fibers and left!

I guess as long as I have been dealing with the symptoms of PLS, I am lucky to just now have to be dealing with being in a pwc for the rest of my life. Its been 20+ years since I first started tripping and falling and 5+ since diagnosis.

 

[Wondering Runner]

Hello AKmom, In a word, yes. Leg pain is a stone in my pocket day and night everyday. I'm so sorry you have this distraction on top of all else.
Baclofen did not help me and I have declined the pump. Has that been on the table for your spasticity, assuming that is the primary cause? I fidget and flit from power chair, which mostly gets me from sofa to the counter where I am learning to do things by reaching the span of a Teradactyl. Or I stand and lean against the counter for spurts and shuffle around by holding on to things.
Here is what has helped me: moving slower than I want to avoid any jarring joint movement, tripping or strain (prevention); fidget away and somedays mostly on a sofa and others in a variety of chairs but each for short periods; commited to a toilet riser to reduce knee strain and tendon rubbing/pulling; grumble as needed; take my pain med as rx'd to stay ahead of it as best as I can; use pillows under my knees to ankles to keep a slight bend in leg and to adjust hips such that there is no pulling (this is a real bummer for me as my pelvic area aches and keeps me awake often); and I do keep moving and stretching through the day. Thee best treatment has been a sea and epsom salt bath soak to warm my joints and all that jazz, though it is problematic to get in and out safely.
If you're able to get a Roho air cushion seat from an ALS loaner locker or through insurance or anywhere else you might be pleasantly surprised at how much of a difference one is to a gel seat. I rushed geeetting a chair because the process was lengthy and did not know the nuts and bolts of jack. In the end I spent 500 clams on one out of pocket. Best of luck to you on the ordering and more importantly I do hope you find some reprieve from pain some days.

 

[AKmom]

Yeah, occasionally hubby will help me in and out of our jaccuzzi tub, but that is becoming harder for him to do. At the clinic, they had me sit on a roho air cushion. I really didnt find it comfortable, it was too hard for me and was difficult to stay on. Although it really didnt fit my pwc that I tried it on, so do not know if it would work for me or not. My problem is i had broken my left hip (greater trocanter) in 2006 in a fall and my hip has had pain since. But then I reinjured it in 2011 in a tumble down the stairs. This has doubled the pain. I went to a orthopedic surgeon who basically gave me a steroid shot in the hip and said if that doesnt work, then I will have to live with it because its most likely related to PLS. I am not a fan of docs, thus why oneof the reasons it took so long to diagnose. Thanks for your suggestions. I just hope the chair goes through.

 

[Wondering Runner]

Ahh, the plot thickens. Falls are insults to injury! I acquired an air mattress and felt las though I might fall off so I hear you. The cushion may have been over inflated as you should be secure. If you felt unstable then nuts on that noise!
Good luck, stay persistent.

 

[texastracy]

When I go to clinic, they always ask me if I have had any shooting pain in my legs or shoulders. I don't, but I wonder if what you have is the same thing they ask about.

You will be glad you got the fancier chair as the journey continues. My chair tilts, reclines and elevates. I use all the functions every day. Nothing beets that zero gravity.

Tracy

 

[AKmom]

I sometimes wonder if the shooting pain is nerve related, but then it doesn't go through the whole leg. It more or less will just shoot through 1 muscle at a time. Like sometimes its an outer thigh muscle and other times its an inside tendon/muscle going from the inside of the knee to the top of the calf muscle. I get them occasionally in my arms, but usually up by the shoulders and not as often as the legs. They are piercing sharp pains and only last a few seconds to a minute, then stop. Rubbing them doesn't lesson the pain, but adds to it. Really weird.

texastracy, I agree, the chair will make an improvement. Matter of fact, I should call the insurance to check the status, you know, the squeaky wheel and all that....

 

[affected]

AKMOM, the roho should be inflated so that you sink 1 inch down into it. This would mean the one they sat you on was overinflated, they are amazing.

But they have to be inflated for the person - someone weighing twice my weight and a different bum shape would need theirs inflated differently ...

 

[olly]

Hi Joyce.
Sitting upright is a killer,i find if I am on my mobility scooter for an hour when I get off my lower body and legs are so much stiffer but like you my back and hips are greatly effected. I do some ironing while sat on my perching stool but that does not help as I still end up with crippling back pain.......only comfortable way is to sit in bed on my memory foam mattress or lay back on the sofa so not putting any pressure on the lower back and hips.
Don't know what to suggest sweetie,let you know if I think of anything xxx

 

[AKmom]

Hi Tillie, I certianly did not sink. What I found really uncomfortable is that it felt like something was poking my bum right in the crack! I think it was one of the tubes that hold the air. Quite uncomfortable. I do not know if i could tolerate this kind of cushioning. I had bought a cheap memory foam and gel one that felt pretty good in the beginning, but as time wore on i think the foam lost its memory and it remains flat to this day. My big bum was too much for it I guess!

Caroline, its the pits for sure! I am still waiting to hear from the pharmacy about whether they sent the right codes to insurance yet. Last I heard last Friday was the insurance said they were waiting on Geneva Woods pharmacy to get the correct codes and report from the seating clinic to them. I am hoping the new chair will give much relief from the pain. Hugs!

 

[AKmom]

I posted a reply that went to moderation. Hopefully it will be up soon.

 

[dalvin]

Akmom, pressure adjustment is vitally important for the roho. Easy to adjust. It has a valve that you open for inflating and deflating. Just open the valve a little while your sitting on it and let the air out till your comfortable. If it gets too low it has a pump to reinflate

 

[billbell52]

I go to an MDA/ALS clinic. I've looked at every PWC going in there and by far the most predominate one is Permobil. I ordered the Permobil M300. I has a 4" Rojo cushion. It is extremely comfortable. I can recline and sleep in it. I generally am in it most of the day. I ordered with the lift option which was extra but it was well worth it.

 

[AKmom]

The permobil is way out of our affordable range, even with insurance. The only mda "closet" I know of here in my state is in Anchorage and I called them when I first started needing a pwc for traveling. They basically told me they will not provide anything for me as PLS does not fall under their umbrella of diagnoses that they help. I was so tired of arguing and being jerked around so many years by different doctors with differing opinions and mis diagnoses, that I hung up and just let it go. Although I have not given the local mda donations since then like I use to. So I paid out of pocket for that little pwc and it was 1/4 th the cost of what I will be paying for my portion of this new pwc. Totally rediculous what manufacturers can get away with charging for durable medical supplies.

 

[billbell52]

I ended up paying $1800 after insurance. You should look for a used one. I have seen plenty of them that are as little as a few years old. They are preferred by ALS patients.

 

[dalvin]

I only paid $300 out of pocket. Insurance covered the rest, little over a year ago