Right now i am really struggling.. I have been having a lot of symptoms, and i am unsure if they are normal or not..
My vision has downgraded by alot, its blurry and i cant ever be out driving in sun, i cant see.
My right arm is my rsd limb, and i have hardly any movement in it. but lately i have had problems with both knees and ankles, burning sharp pains, falling because they are not very strong. Twitches in my neck '& both hands & back/legs.
IS this it possibly spreading?
With these issues, driving is so hard, and im scared something will happen.. but i am struggling to say "i cant drive anymore" because i am losing all the freedom i have...
So, at what point did you say, its not safe anymore, and let it go?


I probably sound whiney, and stupid, but this has been so hard, the reality of this disease is killing me.
Any advice would be appreciated.

candice

Yes it is possible you are experiencing spread. If you don't feel comfortable driving then don't. Only you know whether you are safe or not. and the risk of hurting yourself or others is not worth it.

When my RSD spread I had a lot of issues with dizziness and blurry vision and stuff. I didn't drive for over a year. We tried alot of different things but when I started on clonidine patches that took care of the dizziness and blurry vision...have you tried it? The only issue is that when I am out in the sun/heat too long I get dizzy and the blurry vision returns because the patches will give out more medication in the heat and that's not good. But I am able to drive safely again.

I agree that you should not drive if it is not safe. I didn't for a whole year and I know how much it sucks to be trapped inside the house but you have to do what is right.

The other issues I would look at one at a time. If it's spread then you should try to treat it ASAP because that's your best chance at fending it off. Make sure to keep moving those limbs even if you do it while seated. I had really bad tremors with the spread and still get it from time to time.

But check with your doctor to make sure there is nothing else going on (which also may be treatable) and if there's anything else you can do to help with the symptoms.

yes, i had not been driving here lately, and always going places with other people. But, i am worried for the few doctors appointments coming up, when my boyfriend,and mom are both working. I am unsure of what i am suppose to do. when most of the time im fine to drive. But i have these spells sometimes, and that is what worries me.

As for getting treatment, i have no insurance. So everything is out of pocket. It cost me 80-130 every visit to pain doctor, and way more for pt.
The doctor recomended more nerve blocks, but they cannot due them since i no longer have insurance, and i cant afford the 800 a month for cobra. :/

I guess i just wanted to know if others have been in my position, and what you did to keep your life in order to some extent.

I appriciate the advice, and my boyfriend said he does not want me driving if i have any doubts and i agree. But, the bus stop is about 1/2 mile from my house, and with my legs like they are i cant walk that well.

Does anyone know of any other services where i could get help?

Also, inreference to the doctor thing. i had posted earlier my doctor issue with the pa.
and i have tried to call the office several times, and he never calls back,and they said i would have to make an appointment, and i cant get in until the 23rd.. I hate being in this small town where the wait times are awful, and there are very few doctors.

We are contemplating driving to doctor hours away once a month for meds/and care, but that would mean some oone taking off for it to take me. :/

I feel for and identify with your situation. It does sound like it’s spreading. For me, after a while, it was clear that it was RSD spreading. Same inherent symptoms. Oh those blurry eyes, they do suck. Glasses don’t even help at times. I often have to crank my zoom on my screen and it’s still blurry. I never had vision problems before RSD. The meds can make it worse too.

Losing your former self to this condition is a rough process. I still struggle with that and I’m 8 years in. to say that it is frustrating would be an understatement. As for driving, if you can’t… don’t. and only you know when to say, I can’t. But I will say this, it has caught me off guard too. Mine is everywhere but prominent from the waist down. I have been driving when all of the sudden BAM! My foot/leg (s) is in what feels an electric storm. Pushing on the brake is the worst. I’ve been in traffic and all the sudden, I have to try and drive with my left foot and I look like to other drivers like I just got my license or something. I’m not good at it. The upswing… kick *** parking ) In jest, my husband said he married me for my parking ) lol. Lord knows I/we try to keep a sense of humor. It is tough at times, but it does help.

Insurance, I’m with ya hon. Lost my b/c of the $1k premiums could no longer fit into our budget and still eat. I get what you’re saying about the docs. I tried to see some on a cash basis that flat turned me down. Not even knowing anything about my income (or lack thereof) they said “you can’t afford it”. I am about to try to get SSDI. I pray that I will as it seems to be the only option left. I have been rationing pain meds for a while now, and have a PC doc that gives me Neurontin. Thank God for that drug. But the pain meds are just as necessary, and so difficult to obtain without insurance. I had a PM doc once upon a time, and I sure wish I could see him now. I too had lots of tremors as it spread and progressed, and still have them from time to time, but the Neurontin sure helps keep them at bay. Catra121 is right, you gotta try and keep moving as much as you can, and yet know when to stop.

Hang in there luv…

Over here we a required to tell the DVLA of anything which mightaffect our ability to drve safely, when there doctors checked my medical records they immediatly took my licece away. No loss as an ex-police officer I knew I could kill someone easily

We have decided for my to not drive, i guess i just felt so upset that i cant even drive, nor can i ride a bike or walk or get to the bus stop. so now i am stuck at home, but now i have relised that i never reall left before, i usually am not feeling good enough to leave the house.

So, i guess its more me being emotional then practical. because i hardly drove anyways, and i barely leave the house. its just now i dont have the "freedom" to leave if i wanted to. Thank you all for you help and advice. Sometimes you just need help getting the grasp of it!

Many city's offer a van transportation system for the elderly and disabled. If you call your local United Way, they should be able to give you more info.

I would check what services your town has for the elderly/disabled first.

Many churches have volunteer transportation to help congregations members who need help.

I am planning a move soon.....closer to my parents. Pretty pathetic to depend on my 75 year dad for a ride to doctors appointments, but that's my plan for now. My realtor laughed at me because for most people "location, location, location" means near good schools, on a cul de sac, etc. For me, it means a short walk to the grocery store, pharmacy, and my parents' house.