CRPS/pain syndrome. is it time for a mobility device. Embarrassed.

Would be interested in knowing how your experience progresses with PRC. Best of luck and keep your eye on the prize.

Hi all,
I don't know if my PCP office has sent my records yet but I see her this afternoon. I'll hear from Mayo Jax once they have looked over everything. He didn't lead me to believe they had a wait-list but meanwhile, with each passing day it's become more and more difficult to find any one place to stay for a month (usually a large discount from just three weeks. So chances are feeling less hopeful that anything can occur in time for me to be able to afford to get there prior to April or May.

I'm also now wondering about other health reasons they could refuse me and in general, less hopeful. Then today was $450 at the dentist and next week $800. That's pretty much any money had I felt comfortable adding to a credit card. Life happens. Sadly, part D has a $500 deductible in January for meds that I need to consider and of course, the January Deductible for Medicare Part B. I wonder if anyone else thinks about what it's like to be a senior and because of January Deductibles, we can't really give anyone Christmas gifts unless for many seniors, money is not an issue. I've stayed home alone Christmas so I'm not embarrassed that the great nieces don't get gifts from me but do from my other sister, nice gifts or nice sized amazon cards. I know I'm no alone in that. Kids don't know their gift could mean we don't get meds in January/February/March. They don't need to know but financial stress at the end and beginning of the year is huge on seniors and the disabled.

I went to the local medical lending place and they might have a lightweight scooter coming in on Friday I can buy for $300-$500. Medicare is 10 or so months behind approving mobility devices and will not pay for anything that allows you to leave the house. They wouldn't pay for this scooter anyway. The wheelchairs that approve are 300 pounds and scooters also too heavy to put in a car.

I don't have Medicaid so their rules don't apply. They would actually pay for me to get help in my home. I have Medicare and a supplemental that will pay the entire 20% Medicare doesnt pay but only what Medicare itself will cover so NOT a foldable lightweight chair. And NOT home help. Medicaid does lay for home help.) Medicare should get with technology and also know, getting DME that further traps us home is contrary to life.

I and others on Medicare, have insurance that rather we stop life and just stay home. People need to consider this when pushing for "Medicare4all." People who don't have Medicare see if as a panacea. Another topic. A better than nothing plan for many I know but no panacea.

So that's where I am. I don't know if even getting anything that I can't put in my car is worth the $300 esp with winter upon us soon and will get too cold to be out on a scooter and even too cold to be outside trying take it apart to get in and out of my car. Batteries can't be left in the cold so it would need to go in and out of my car each day.

There was a 3 day church event, workshops, concert etc last weekend. I went Friday and Saturday on crutches. By Saturday night, I came home and went straight to bed. Gave myself permission to stay home Sunday and was very disappointed. I realized I have gotten to the point where it's almost acceptable that I pay the price for trying to do any semblance of life and if I had had a wc or scooter, I would have been in less pain Friday and Saturday and would have been able to go Sunday.

There were things said about accepting your less than perfect body on the virtual service Sunday that hit me. I realized I needed to stop feeling so full of ego and false pride. It many be that people go in in a wC and computer walking but what about the spoon factor? I know with CRPS I will never be pain free soon (I went out of remission 15 years ago when I had my knee replaced.)

I'm feeling more hopeless about FL but more hopeful that I can at some point I can adjust to a mobility aid and the money will exist when I need it. So, pay down credit card bills (new bed and dental work,) see where thing land when and how far away I hear from Jax, I'm on Prednisone and gaining weight and meanwhile going to use the hopefulness I had a few weeks ago and change my diet drastically to anti inflammatory, maybe see about look therapy?, I see someone finally (8 month wait) to see someone in the post covid clinic treatment program.

And try to keep going. My legs are on fire from the hips down with CRPS. I wonder what the pain program success rate is with CRPS. Improving core strength is good.

Thanks all. I'll post here updates but in general, I'm looking at what I can do from home, that I can afford, to make my life better. I'll see if this scooter is something just using in the house this winter will help. The medical closet has huge Medicare approved WC for sale - $500. But Medicare would pay 100% if you have insurance so best to leave those for people who don't. They have a few others that are smaller to look at for in the home.

Sorry to sound less hopeful but I discovered the pain clinic at the wrong time of year I fear. We'll see if they even accept me first.

Thanks all. Be Bold.

I would love to here from bebold on how you went I am in a very similar situation

@bebold and @chuck406 - Be Bold, as way of introduction, I am a 72 YO woman who was diagnosed 4.5 years ago with CRPS in my right foot/ankle. Three years ago, I also developed pain in my left quadriceps which though not constant limits mobility and shoots knifing stabbing pains when I "overuse" it. I like you am on Medicare and have Supplemental Insurance. I recently applied to the PRC in Jacksonville FL. I have been conditionally accepted into the program. The condition is that I need to meet with a pain management specialist and a psychologist at the PRC for a final assessment that in their opinion, I am a good candidate for the program. Those appointments are next Monday and Tuesday. I applied to the program because I want to get off of my prescription pain medications - 5mg hydro once a day, and Gabapentin AND I want to learn how to safely exercise in order to build back the strength I have lost due to my limited mobility. I find that after 4 + years the hydro no longer is effective in managing my evening pain which is usually in the 8-10 range but I refuse to up the dose and become addicted to an opiate medication. @rwinney a Volunteer Mentor on this site can give you information on the PRC success with CRPS and point you to some videos that my give you hope.

As to your question about mobility scooters, I have a mobility scooter and I also use the "handicap scooters/carts" they provide at grocery stores other large stores like Walmart or Target, etc. At first I too was "embarrassed" to use them and didn't want to be seen by anyone I knew. After all, I do my very best to play down my disability when I am around friends. I refuse to give up the things in my life that get me out of the house so I continue to sing with the chorale in our community, play my ukulele and washboard (yes washboard!) with various community groups and go out to lunch and sometimes social events with my friends. I do not use my scooter when engaged in these activities because I can often sit down and only need to walk short distances.

The mobility scooter I purchased is called a Glion Snap-N-Go https://getglion.com/product/new-snapngo/. I purchased it from a local store that sells motorized wheelchairs and scooters rather than online because if anything went wrong with it, I had a place to take it and get it repaired. The model I purchased costs $1299 new. If you get a "prescription" for a mobility scooter from your PCP, they waive the tax (at least in NC). I like it because it uses a lithium ion battery that only weighs 3.3 lbs. rather than a heavy 12V battery. The battery is easily removed from the scooter so you can bring it inside your house on cold days to charge it. The base frame weighs 31 lbs. and the removable seat is fairly light weight. Glion just came out with a new even lighter version of the scooter called the "Mini" which has a frame that is only 25lbs. and costs $699. https://getglion.com/product/new-glion-mini/ I have not checked out this scooter so I cannot vouch for it.

I do really like my Glion Snap-N-Go. It is comfortable and the seat and foot rests are adjustable so you can adjust it to fit your body. I mostly use it for shopping in stores that don't have mobility carts, and for taking "walks" with my husband on a paved walking path in our town. I also take it with me when we go visit family so I can keep up with my everyone and go to events or to outdoor parks, botanical gardens, etc. with them. It is a whole lot better than sitting home and feeling sorry for myself when everyone else goes off somewhere to have fun! I do not need to use it every time I go somewhere (like to a Chorale rehearsal) or around the house, so that is a blessing. When considering a mobility scooter I urge you to give them a "test drive". We went to a store that carried multiple brands and the one I thought I was going to like I disliked immensely. The seat was uncomfortable, the ride was very jarring, it had a heavy 12 volt batter and was not really very portable. Some that claim they are "portable", make you break it down first into 4 parts in order to load it into your car.

So, how did I overcome the "embarrassment" of using a scooter? My friends saw me first using crutches, then using arm crutches then a knee scooter and I just smiled when I saw them and engaged in conversation with them the same as I had before. I even performed with my Chorale group in front of good size audiences while using the knee scooter! They are all very empathetic toward me and understand that I only have a limited number of steps (those spoons) in a day and that I will often need to sit when they are standing or will go home early because I have reached my limit. And, I am not shy about telling them; "Yes, I know I LOOK fine, but I am in a lot of pain right now and I just need to go home/sit down/do or take something to help it." If I felt I needed to use my scooter in order to do something with them, I would do it in a heartbeat.

As to strangers in the grocery store, I smile at them when they make eye contact. It makes them feel comfortable and they often offer to help or graciously move their carts out of my way. If someone (usually a young child) makes a comment, I ignore it and allow their parent/caregiver to have a "teachable moment" which they do. So in a way, I am helping to teach children how to become accepting of people with mobility challenges.

Best of luck to you on whatever you decide!

Been in a manual wheelchair from hemiplegia since I was 17(50 now and been living independent since I was 19) You deal with reality with a held up high head or bury yourself in the sand. Nothing embarrassing about being wheelchair bound unlike your attitude.

Been in a manual wheelchair from hemiplegia since I was 17(50 now and been living independent since I was 19) You deal with reality with a held up high head or bury yourself in the sand. Nothing embarrassing about being wheelchair bound unlike your attitude. Do I need to mention the sin of pride too ?

I was diagnosed with CRPS after total knee replacement. The pain was so bad I am seeing pain management monthly, started Ketamine infusions, nerve blocks regularly etc. at the time of my diagnosis my son was 7. He understood that I couldn’t run with him or play ball etc. my insurance would not give me a mobility scooter but I couldn’t get around Disney workday, tge state fair etc, without one. I purchased one on my own and it’s a game changer. When my son wants to ride his scooter around the neighborhood, I follow on my mobility scooter, when he goes bike riding I follow on my scooter. I was 48 when I got my scooter and I don’t need it for a trip to the grocery store but I use it wherever I need to. Don’t be ashamed, your scooter will improve your quality of life and allow you to engage in activities you otherwise couldn’t. Forget what anyone else might think, focus on the positives and get out and ride!