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

You do what you need to have value and joy in your life. What others think is none of your business, per Dr. Phil.

@bebold, I so agree with @jholland. It's your life and you have the right member name that tells me a little bit about you, so take control and Be Bold! Love your member name!

Thanks all. I always say "Be Bold" is a desire, where I would like to be, not really where I am at the moment. It's more of an affirmation. A work in progress? 🤔 But I am a really good advocate for myself and others and I was a nurse which gave me a total fearlessness over doctors etc. So, in many areas of my life, esp sharing my story when it feels safe (sadly more with strangers than "friends.") I hate to think Dr Phil might have been right, stranger judging doesn't hurt and I don't really care. The shaming has become internalized. Sorry to go all psych on you but more and more I realize, even at my age, how captive I've been held by my childhood, by shame. Shame that my body has always been "sick" in one way or another perhaps. Many childhood things. Bullies to be embarrassed by and a very insecure child.

I'm realizing I think I hit the nail on the head - that day in 5th grade I remember so well and bullies who are esp mean to pick up on anything that made you different. Funny, how things can throw us back in time. But seeing what ends up coming out, like what I wrote here, makes the light come on. Bullies damage people, sometimes for life if we let them. Time to deal with childhood shadows still affecting my life. It's hard to fight enemies who have outposts in your head. Thanks. Writing this here has helped. Be.

It's interesting how you talk about bullying affecting your life. I was bullied as well that started from second grade (year I received glasses) up until middle school when I was cornered after school, they knocked my glasses off and I popped the alpha bully in the mouth in front of his friend. It stopped after that.

With regards to CRPS, I can understand the feelings that live inside your head. The isolation, self-doubt, will this get worse, the fear, despair, and the emotional rollercoaster of feelings of this spreading. Looking normal on the outside without anyone really realizing what battle it is to live with this complex disorder every second of one's life. I too have have a long multiple decade bout but am only 43. I wonder how life will be in my 60's and am quite concerned to be honest.

I am not at the point of walking apparatus, but we went to Disneyland mid-June and I had the option of renting a scooter. I fought it and ended up walking nearly 12 miles in two days. My family was impressed but I suffered dearly for the decision to be tough rather than what I saw as a pride move than doing what was right for me. I too have self-image problems and try to protect how I view myself rather than people judge. I skipped the scooter and paid dearly for over a week in an uncontrollable flare-up.

It's easy for people to tell you to do something if it makes your life easier, the decision to do so is to struggle with the mental game. In my opinion, just being open with your family and friends may be helpful. Some understanding goes a long way. I've lost many friends over the years due to CRPS, and can sympathize that it is easier to talk to strangers rather than friends about CRPS. My boss told me earlier this year that it upsets her because she can't do anything for me. That hurt me because I want to be at work, but now when I flare-up I normally use the intermittent FMLA to shield my coworkers from the rollercoaster of pain that I experience rather than have people pity or have to ignore my symptoms. The first day is the build-up but the oven timer resetting can take days. I never use FMLA on the first day and some may have to see things they don't want to. Bothers me and I do the best I can at work, but I see her point, just sucks. Work keeps the mind busy. It's when I relax that everything goes sideways. Take advantage of the good days, but my life is heavily weighted towards bad days. I don't know.

You need to do what is best for you in the end. If a scooter, wheelchair, walker, etc. helps, then do your due diligence and research what you need/want. Look at the dimensions of the product. I know that sounds shallow because it always comes down to money, insurance, and others making decisions that they don't understand. I don't know your financial situation and am not prying but I wonder if there are grants for medical equipment.

I too find that even typing out thoughts and trying to help others on Mayo Connect feels as if a community comes together to share and seek knowledge and experiences which gains perspectives and voicing opinions helps soothe the soul.

Personally, the way I've used CRPS to explain things to people who are close to me, and even doctors, is keeping a photo journal when it flare's up. Just having photos to describe what is happening is helpful. I don't go too deep with friends. They know I had an oilfield accident and my knee is the main problem but mechanically it's been fixed as best it can be. Other's have asked if my back is bothering me because of the way I squirm in a chair when a flare-up is near. My back is secondary issue but likely is related due to a number of factors like slipping inside huge CNC machines, or tripping down some stairs thanks to a hyper puppy, and the original injury too. The other issue outside of the traumatic injury that developed that causes the most trouble, CRPS and that is too difficult to explain with real clarity because even the medical community struggles with it, let alone the general public who can't imagine a level of pain such as that. Explaining the McGill pain scale is where I notice that is what changes relationships with friends, a shift in wanting to explain to their reaction. I don't do it anymore unless asked how bad it is.

Sorry to ramble.

@chuck406 Thank you for sharing your thoughts.

@bebold Hello there. If I had a magic wand, I'd pouf you to Mayo Clinic Pain Rehabilitation Center... where some people begin in a wheelchair but leave on foot. PRC offers so much physical and behavioral therapies that would greatly benefit you based on what I've gathered from your post. Oh boy, if only it were that easy, my wand would be ready!

Thank you for sharing your struggles and inner most feelings. At the end of the day it's all about you, your needs. Noone should live rent free in your head. You are the one that matters and you gotta do what's best for you. If that means a wheelchair then so be it. Make sure you look GOOD in that wheelchair and let 'em talk. 😉

Rachel, And so poof! I was originally looking for an inpt intense program as I thought that's what I needed. Then realized you had an intensive outpt that is 5 days a week for 3 weeks. I am very fortunate to be retired and chose the more comprehensive medigap coverage so I am covered 100% by insurance. Can't afford the hotel but have found vrmo's pretty close by for as low as $900 for the entire month. Doable esp with the good fortune to
most likely have the medical paid for. And I'm close enough to drive the not even 7 hours and be there. (NC)

I'm thinking it will also help regulate my sleep and life as things in general are very out of control with sleep/wake/diet and well, laziness too. We get into bad habits and I need a real shift. To reawaken to life. Esp since I also have longhaulers for 2+ years and it's taken a huge toll on me and so many of us. A kickstart back into life is definitely in order! I need to start doing life again and your program feels like what I need. So I was going to contact someone and check out insurance and waiting list and well, maybe get out of hurricane season! Or maybe closer to holidays where I can spend a little time with family in FL after as well. When I'm good as new! A month at vrmo gives me a few days before to acclamate and a few days after to rest and visit. I'd have my car there.

So, funny you should mention it. I don't take pain meds except occasional toridol and a small amount of Ativan for sleep so I was thinking I would come off of first?

I will call next week and speak to someone about the best plan. I need something to give right now. I'm not ready to give up to a wheelchair and wonder if that's the beginning of the end for me. It's one thing to feel ashamed of my body after all these years, and my weight which plays into will they think I'm in a chair/scooter because I'm fat! I'm not ready. And I need help. Also good time to seriously get back to an Antiinflammatory diet. I know it's helped before but chocolate has helped the pandemic!

So, wave that wand. I plan to come down. I was even thinking if someone else wanted to be there but can't afford the $200+ night for a hotel, we could figure it out together. Always good to meet new friends. There are vrmo's not far from Mayo.

Keep a good thought. It's my latest plan. 💜🤞🏼🙏🏽 Jump start my life again. I've been down for too long. My psychologist specializes in autoimmune and other "chronic" conditions and knows CRPS and what I have gone thru these last two years starting with my mom dying of covid in Feb 2020 before we knew it was here. And so many other things that have taken me down the rabbit hole. She and I talked about it last week. She is all for me coming down! 100%.

Wave that wand. Keep away the hurricanes, Hope y'all made it thru better than some others...I'm on my way.

Currently I use forearm crutches when out and about, I'm unaided at home and use a stool on wheels at the sink, desk chair when I need to etc. That's why a wheelchair is huge. Feels like a slippery slope as I now also need oxygen at night from covid. Not ready to give up. There needs to be a way. I am hanging my hat on Mayo pain clinic this week.

Yup. Like you said. Exactly. So yeah, like Disney, putting ourselves last and for what? The next days or week when everyone talks about the great time we all should have been having, I will have let my ego decide to not care about my body. This is exactly the reason for the "is it time" post. Even to just save spoons so the days I go even to PT for 30 minutes, life is done that day. Or psychotherapy - that's it for life that day. Maybe even food unless I drive thru McD depending on energy from rarely more than 4 hours sleep for months now. If you see what I posted below, I need a swift kick before it's all gone. I'm already feeling way older than I should. I am not ready to start the slippery slope.

About aging, I actually have been doing mostly good - esp lamictal helps me some - with depression as well. It's COVID in July of 2020 that brought me to my knees. Tho not literally of course! God forbid me trying to get up.

I'm starting to work with habitat who says they can help me get a walk-in shower, stuff to make life easier just in the normal aging process that is not about sick me. I can't find homecare help that Medicare will pay for so it's all on me to find out how to make it work.

I hear you and thanks for sharing. Funny about the shared childhood experiences. Maybe those hits to our adrenals when we are young leave us wide open to many manner of autoimmune issues. I know I have several. Stress terrible for the adrenals. And no kids get out of their teens without adrenal hits. It's why I also take LDN plus a plethora of supplements since COVID.

BTW, it was my 3rd back surgery for slipped disks via an on the job injury when I was 23 and lifted a patient, that caused my CRPS. I woke from surgery with a huge, bright red, burning foot. The kind like yeah, the surgery 4 hours ago on your back is nothing compared to this FOOT! I didn't know at the time, when they called it causalgia how fortunate I was that it was diagnosed day one. The surgeon knew exactly what it was but just told me, told me it was not curable, it was like this for life now, and walked out. I was still hazy from anesthesia. They know so much more about it now. There was zero treatment. It was assumed he cut or damaged a nerve. I discovered I had a civil war injury and that was it for life. I used crutches for 25+ years and eventually had a few remissions. I was out on depakote for seizures before they even knew it helped pain. I was part of the clinical trial back in the 80s. For Neurontin also. At some points, depression was the worst part of CRPS. 23, career and life gone, I had moved 2000 miles from home for a great nursing job when I was 20 but now, back to my parents house, SSDI, 3 months in a chronic pain unit back when workers comp paid for things. and shortly, totally on my own. By choice. And now 67. Who knew a thing like a pandemic would be my downfall. Feeling hopeful right now tho.

Thanks for sharing. Be

@bebold You ask if it is time for mobility aids. The when and the what are up to you and your decision alone. Be proud of the fact that you are taking charge of what you need to do to have as good a quality of life as you can. What others may think be d***ed! Along with the physical manifestation of how you are helping yourself, comes the emotional and mental side of it all.

For many years I dealt with less-than-stellar movement due to osteoarthritis in my right knee. I recall the orthopedic doctor telling me I was "too young" to have this. To me that meant it made me look like a fake to use any help. So, I limped along literally until 2019, almost 20 years later! What drove me to using a cane all the time was getting neuropathy in my left leg and foot. After falling several times because there was no feeling and no sense of where that limb was, it was in my best interest.

Am I happy to be using a cane continuously now? No. But it helps me feel more stable, and more confident in movement. Recently I have been eyeballing walkers or rollators. When I go for a walk in the mornings, I use two walking sticks to help my balance. Also, I have an unfinished madrone wood limb from our property to make into a staff for walking.

You have had some great responses here! I am confident you'll make the right decision for you.
Ginger

Hi @bebold. You have some good, progressive thoughts flowing in a positive direction. Awesome! Yes indeed, Mayo PRC helps with sleep hygiene, and definitely gets you motivated and reawakened. Having a team of professionals and peers encouraging you for 21 days is quite remarkable. It was an experience unlike I have ever had, which is why it was truly life changing for me. If you can make it work, by all means GO FOR IT! Understand that it'll possibly be the hardest thing you've ever done, but most rewarding and worth while.

Not sure if you have explored the Mayo PRC site yet, here you go...

Mayo Clinic Pain Rehabilitation Center -

- https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

You also can apply to the PRC program directly through this link -

- http://mayocl.in/1mtmR63

You've been through a lot these past few years. I'm so sorry about your Mom. Your psychologist is spot on. I'm glad she is advocating for a forward moving plan.

I hope your week kicks off right and you continue to feel motivated. Looks like you're in control of that magic wand all on your own. I'll just poof you some good, positive vibes of support. Keep up the good work! Will you update me on any progress you make going forward?