Major ventfest, sorry in advance.

I've had RSD since January of this year, and I'm not sure how I'm going to make it through even a day without losing my mind, more or less a life time of this!

As some of you know, my RSD started in my foot following a 'minor' foot surgery. It has since spread up my leg to my knee.

I had some success with SNB in the beginning, but they are not longer helping me. I've switched Dr's, but I dont see this one helping me anymore than my past Dr.

I do not think I can face a life time of this, it just doesnt seem possible! I try to 'take a day at a time' but that just isnt working.

I've looked into several treatments for RSD, but they either come with some major warnings, cost WAY too much, or do not have the medical support I need to be willing to start on my own. So what should I do - Rob a bank? Risk the RSD spreading? Which is the better option?

So what now? How am I supposed to live like this forever?

I just found out that because of a choice I made seven years ago to stay home with my children until they start school, I do not have enough work credits to qualify for disability. And my husband makes 'too much' for me to qualify for any other assistance. We're going to lose our home very very soon, yet we make too much? Isnt that nice!!!

Soon I'm going to be homeless, disabled, and in more pain than I ever thought was possible with no known treatment or help. How exactly am I supposed to cope with this? I have more panic attacks a day than I can count, and I spend my sleepless nights crying from not only pain but horrible depression.

How am I supposed to take my situation and try to take it a day at a time? Or learn to cope? Exactly how much is expected from me??? I'm pretty much to the point where I'm done - and I dont know exactly what that means, but for whatever it does, I'm pretty flippin much there! How is any of this even worth it?

Again, sorry - but I needed to get these words out of me or I was going to explode.

I think anyone with red reaches a point where we ask ˝how can I do this FOREVER?" Moments where we feel we've reached our limit emotionally and physically.
Its a scary place to be..
You need to reach out for help and asap. Your life is too precious to give up on. Right now I'm sure it feels like it will always be this bad.. but you have to believe there will be days that are good as well as hard.
I think having a therapist is a huge help. Just talking about what you are going through can help. Holding in emotional pain can make physical pain worse. Don't be afraid to try an antidepressant if you need. Many of us are on them here.
Don't give up! You are precious and you are here for a reason. Believe it!

I am very sorry to hear this and I completely understand the need to vent. I've definitely been there a time or two (or a hundred...but who's counting?).

There were many times that I was extremely overwhelmed by everything. In those moments I tried to follow the best advice that I have been given during all of this: Focus on the things you CAN control and not the things you can't. It's really important to TRY to calm yourself down and take things one at a time.

I don't have much money either and there were several treatments I wanted to try or doctors I wanted to see that I just couldn't because of the cost. I wish things had been different but they weren't so once I made the decision that those treatments were out of reach I moved on. There are always new things coming out and other things to try.

As for the treatments that don't have the medical support you are looking for...there may be ways around that. I'm not sure which treatment options you are speaking about but in some cases if you are working with a doctor you trust then maybe you could get them on board with you. Bring them the research and come prepared to discuss WHY it is important to you to try this treatment and why the other treatments are not options. You could also look into traveling to receive the treatment. If the treatment itself is not out of the budget then maybe you could find the funds for the travel. Also consider what the cost and risks of trying the treatment on your own vs. the possible benefits. It may be that you are so overwhelmed right now but if there is little to no risk of doing the treatment on your own (like with tDCS) then what do you have to lose besides the pain and some of your time?

If those are not possibilities then you need to think outside of the box and see what you DO have available to you. I know it sucks when the options are limited but we do what we can. Until I found tDCS I just assumed I would have to live with the pain. I pushed really hard through months and months of physical therapy to get the function back and I did it without much in the way of pain relief. It wasn't easy...but I just had to use all the tools I had (hot bath with epsom salts, TENS unit, ultrasound, space heater, heating pads, four Fs diet, and physical therapy) to help me get through it. You would be amazed what you can accomplish on your own if you set your mind to it.

There are always new things coming out in the medical field so just because there isn't something available to you today doesn't mean that there won't be tomorrow. You just have to make the decision to not give up and to keep fighting. Don't spend all your time focused on the things you can't control...worrying about them does no good. Instead think about the things you CAN control and the choices you CAN make. They may not be good choices but you do have a choice.

And as far as the money is concerned...try to think outside of the box there as well. Sometimes if you appeal to the insurance company you can get them to cover treatments they may not normally cover or that they denied before (possibly making something that is not affordable now BECOME affordable). There are several people on the forum who have done this and I am sure if you post the question they would be happy to share their experiences.

Good luck to you...I really hope things start to turn around and get better for you real soon.

im with you daily....u could be me! they crying, the strss of own medical problems, stress of family. i hear you 100 percent. please dont stop asking for help. also apply for ssi, i doesnt count whether u work, children even quailfy! you may need to find the right meds or the cocktail for you, trial and error suck but worth iy i guess

I wish you all the best of luck.

Most of us eventually find the right cocktail of medications that make this diesease tolerable or a reasonable facsimile of tolerable. Hang in there. Try to usually start medications one at a time. If one doesn't help let your doctor know so you can get off of it. If the side effects are intolerable get off of it. Research pain killers before using them and consider starting at a lower dose. Other drugs it might be best not to read the literature first since you can get a sort of placebo effect for side effects. Don't be too fast to get off of something since some medications take a while to have an effect.

If you can't shake this it will probably change your life but there is life with RSD so don't give up.

I'm going to 'copy' terralyn's answer and say that I've found having a therapist to work with me through this process hass been VERY helpful. She's kept me from going over the deep edge more times than I can count !

While I'm still hoping for a magic wand to make this all go away, I have gotten more realistic on the odds of that ever happening.

I've given up on solutions just falling into my lap. While I still believe doctors SHOULD be doing more to help more of us find help, if not a total solution, time has also taught me not to depend on them. I feel like I've had to educate, prod, or fight my medical team every step of the way. I'd still be miserable 24/7 if I waited for them to suggest something helpful on their own.

For me, the only thing I was 'offered' was PT. Interventions that have been more helpful, like meds (Neurontin, Cymbalta, narcotics), TENS, water therapy, cervical traction, massage, accupuncture, chiro.....I've had to initiate myself, ask for, or beg for.

I believe educating yourself is a great first step. You won't know if your docs are offering you a reasonable selection of txs if you don't know what the treatments are. There are some, like HBOT, tDCS, and ketamine that I haven't been able to try yet.

I do think it's important to not rule out most treatments because of their possible side effects or warnings. That doesn't mean blindly try everything. Some interventions, like surgery (I'm thinking specifically of a SCS here) could have long term effects, and less long term helpful effects, that make it a more serious consideration. As opposed to MOST side effects from meds that cwould go away shortly after you stop taking them. If you are adamantly against anything with a warning, you couldn't even take Tylenol or have kids. You have to make an educated decision on everything after weighing the risks and rewards.

One point you made.....about not being eligible for SSDI because you took time off to have a kids.....is a HUGE issue. I think it's incumbent on all of us to warn friends/family/and future generations to remember that. The SSA may not be solvent for long, but neglecting to consider long term disability insurance of some kind is a mistake I think a lot of young people and folks with young kids make.

You've got new friends here. Many will have had some experiences very similar to what you are going through. Hang in there ! I don't think it ever gets easy, but it can get easier.