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Anyone here been diagnosed with "severe" arthritis in your shoulder(s)? What did you?

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  • Anyone here been diagnosed with "severe" arthritis in your shoulder(s)? What did you?

    I'm a T2 para and I use a manual chair and drive a car. I just had a conversation with my doctor today and she told me that I have severe arthritis. I had been doing PT, but she told me that PT can usually aggravate it, which is exactly what has been happening. Cortisone shots don't do much for me anymore. I had one back in May that gave me about a week of minimal relief. I live alone. Can't change that either. Both kids are in the military and neither is willing to sell their homes or move to a better accessible place to accommodate me.

    I can see my days in a manual chair are numbered but am holding on tooth and nail. I will never be able to afford a van at this stage in my life. I can barely afford my mortgage with all the deductibles and co pays for doctor visits anymore. And still, my mortgage is far less than any rents in Orange County California.

    The really bad thing is, that The Orange County Transit Authority stopped serving my city back in October, so para-transit isn't even a possibility. Oh sure, you can call and schedule a "same day taxi" ride to the nearest address they do serve, which is a Cocos somewhere in Mission Viejo, but good luck getting one, and then, good luck getting a wheelchair accessible van. I don't see how they could make these changes without getting sued, but it is what it is and I have to live with it.

    Please tell me how you coped, what you did for pain relief, what made your life better, etc. Talk to me.

  • #2
    I just got confirmation that the joint is bone on bone, and the doctor is recommending joint replacement. Anyone ever had this done, or something similar? It sounds like a nightmare. I'm really scared now. No one has replied to my original message, so I gather that not many have been diagnosed with similar, or don't want to talk about it.


    • #3
      Wheelie girl;

      I first started to explore my shoulder pain a couple of years ago. The doctors I visited ordered MRI's and other noninvasive tests the results are/were discouraging The (what we call the rotator cuff) and the areas around the joint are totally destroyed and of course along with that is the arthritis!

      The suggested solution really sounded worse than the problem. My son suggested I have my neck explored since there was so much damage done to my shoulder, I did not have a traumatic injury, but the bends that seems to have transformed into something else entirely. While I worked I do not remember doing damage to my neck, shoulders. that might explain these issues. So I am a wheelchair user. My legs are next to useless. I can stand and use crutches for short periods.

      Back to the neck, the cervical spine was all kinds of dislocated. I had the C-3 through to T-1 fused last winter. Believe it or not this greatly helped the pain greatly and I could stop taking the narcotic drugs I had been surviving on, The shoulder specialist was a blow out he was not the voice of encouragement. Neither was my physical therapist.

      This was great until about 6 weeks ago when I fell again in the bathroom while transferring to the hopper when I tried not to create a disaster. I jammed my
      "better" shoulder, the right one. I am trying to stay off the drugs and three full sized aspirin several times a day seems to keep the pain suppressed to an almost livable point. The make believe aspirin, acetaminophen and all the others do not seem to work on me, And I hate the brain fog of narcotic type drugs, I have depended on aspirin for pain for 40 almost 50 years. That's because I am ornery.

      Shoulder surgery comes with a long period of recovery, and for a person living alone probably in some sort of institutionalized housing for the rehab period. the shoulder replacement suggested was reverse shoulders, This was described to me as useless when we who have other mobility problems have to use our arms to take the remaining weight of our bodies off our butt etc. I also do not cannot use a manual chair, that is totally out of the question. When a was a tad younger I am now 77 I purchased a couple of real cheap power wheelchairs That I rejuvenated. They get me where I want to be. I have never applied for a new medicare provided power wheelchair.

      Ask questions, I don't know if this will help you, but as I said ask questions, others may join in, give them time.


      • #4
        From a medical standpoint you will probably need a time of rest following the surgery BUT make sure you check with the surgeon's nurse or assistant on what the protocol will be post op. If possible switch to the other side for transferring instead of the shoulder that is being repaired. After allowing the surgical site to recover then you can start rehab with physical therapy and occupational therapy(if needed).

        Was it mentioned that wheeling your manual wheelchair would further damage your new shoulder? Are both shoulders involved or one?

        Best of luck with moving forward.You are in an information gathering stage now.

        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


        • #5
          I don't want to say what my doctor told me about shoulder replacement. Mine are still doing ok with some pain. I have full movement so far. my left one causes most my problems with pain. My right one hardy ever hurts. But I really baby them hoping they outlast me.


          • #6
            A dang tough situation you are in!!
            Just wondering about your intention to hang on to your manual chair. How about using it part time and using a scooter for outdoors? I use a zx1 and it is invaluable to me. My Polio shoulders began giving out several years ago, and I got the zx1 and must use it every time I go outdoors. I have chronic pain off and on in one shoulder and when it flares up I use the zx1 scooter indoors.

            I heard recently that some insurance will cover the zx1 if a manual wheelchair is part of the purchase. To insure the device fits the chair, I suppose.
            I don't know if you have work related insurance or other. However I would hope you look into the zx1 or other suitable options, rather than waiting for the arthritis to prevent wheeling your chair. Also, don't know if you have shopping places near enough to travel to them with a scooter. Mine has a range of 5 to 10 miles (that's with expensive lithium batteries that I purchased).
            We are a two wheeler couple in our 70's and use a van, so that's fortunate for us, as the zx1 weighs about 70 lb.

            Please let us know what you plan to do.


            • #7
              I bought a used powerchair for $400. I can't afford a chair van either ... many here went to gofundme to get one?
              Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

              T-11 Flaccid Paraplegic due to TM July 1985 @ age 12


              • #8
                This thread seems to have moved on a bit to some transportation of the powered chair. Well we have a standard type minivan with a little crane like thing in the back. jean my wife loads and unloads it. I can currently maneuver myself into the standard front seat of our min van. Loading and unloading the chair is simple, it is simply pushing buttons--up and in or out and down, and connecting the chair is simply snapping 4 buckles on the end of straps to fixtures mounted on the lower frame of the chair. However, this is seemingly becoming a problem for Jean and we are currently searching for an "affordable" ramped drive on minivan. I fear we are going to have to plan on making other more complex living arrangements soon.

                It has always been our nature not to ask, beg, for help. But I guess we will have to search for, and use, some govt. resources we never thought of previously.

                Personally I do not see much use for attachments to manual chairs, I can maneuver my power chair into places within my little home that I cannot go with my foldable manual wheelchair, especially without any attached stuff. I know many folks put a lot of stock in these add on, hook on, gadgets, good for them! I don't !!!


                • #9
                  I am also a para (T5) and have been using a wheelchair for 40+ years. In 2014 my orthopedic surgeon told me that both my shoulders were bone on bone due to severe arthritis and rotator cuff damage. He recommended reverse shoulder replacement for both shoulders.
                  Finally, when the pain was really impacting my quality of life I decided to have the surgeries. He did the left shoulder in April of 2015 and the right one in April of 2016. My results have been good - the pain is minimal and my range of motion and strength are adequate. I'm able to transfer and live independently. (I did have a fall last year and fractured my leg but it wasn't due to the shoulders, more a matter of getting my chair stuck in the grass!)
                  I now use a power chair most of the time and drive a van. I want these shoulders to last so I try to keep from overdoing things.
                  If you want more information about my experience with the surgeries or recovery/rehab phase I'll be glad to share what I went through.