Hi my name is joe i have posted here before

I have crps type 1 and 2 in my right foot after my surgery September 8 2016 and its bad i read all of your post and yu guys talk of flairs i dont get that it hurts every day my problem is i fight though the pain and push to hard and my pain doctor is a nice guy but they are over booked last month he was ready to set me up with spin stimulator then i go see him and he looks at my foot fo 2 min says is getting and gave me a new prescription for new med and said see him in a month then go to the desk and he is book up for 3 months have to be put on a waiting list to be put on schedule my refills run out at the end of this month i take so many pills patches and injections just sick of it is this how it goes for everyone and now i have tostrap a bone growth stimulator to my foot for 10 hours a day and it aggravates it worse i dont know i might just cut the foot off and see how that works

Sorry for the rant its 3am cant sleep even after sleeping pills

Ps my foot the skin look scaley i have tryed lotion but to painful tu aply so i do super concentrated moisturizing bodywash sokes not working any ideas


Thanks for your ears and letting us vent to u

My pain is constant, too, I have not experienced a flare either, but I have experienced painful set backs in recovery. My agonizing CRPS pain was reduced significantly once I started taking Low Dose Naltrexone. I was in really bad condition, heading toward permanent wheelchair disability-foot drop, dystonia, allodynia, toes that stood upright, lax ligaments, deep sores, swelling, thickened skin. I recall how shocked my sister was when she saw the condition of my feet/legs and the extreme length of time it took me to remove my shoes and socks-she also recalls the tears and sobs.

Like you I was not especially fond of my painful limbs. My co-worker called me "the cripple," while suggesting amputation as a solution. Please put this thought out of your mind. Specialists think CRPS is phantom limb pain with the limb-so you are likely to still be in pain after the limb is removed. The pain is signaled from our brains not our limbs.

I had little luck with doctors, who delayed diagnosis, so I was forced to seek remedies on my own. I slept with a stool holding the covers off my feet-as someone here brilliantly mentioned a walker would also serve this purpose.

I wrapped my legs and feet in Saran Wrap after I used an enzyme based exfoliate, applied lotion, followed by liquid lanolin. It was too painful for me to manually remove dead skin. I found support stockings a torment. Elevation did not visually help me, but I still elevate because it might help in a way that cannot be seen. I wicked off accumulated fluid with washing crystals (wacky sounding), once I did this I experienced a change for the better in my skin. I think removing the extra fluid allowed my lymph system to get back to work and do its job.

For deep sores that were not healing I put scotch tape on them. This is basically occlusion therapy and it is considerably cheaper than prescription tape. I found the good stuff worked the best. If you do this please try a patch test first-you don't need an allergic reaction on top of everything else. I wish I had a video of my PT's reaction when she saw the tape. I know she thought I was a kook, using washing crystals, Saran Wrap and Scotch Tape, but these nutty things worked.

Joe,

I understand exactly what you are talking about. Personally I hurt all the time as well and my flares are a dramatic increase in the pain for a short period of time before returning to my "normal". I can't even tolerate things touching my feet and legs.

I also have problems with dry skin and while rubbing lotion on them is very painful I use it as part of my desensitization therapy. I usually don't rub the lotion completely in to cut down on how long I am touching my legs.

Unfortunately, PM being booked up is becoming a real problem. If your doctor isn't meeting your needs then it might be time to look for a new one. Are there other doctors in his practice or group?

Please do not consider amputation as this will not solve anything. Even if the foot is no longer there your body does not know that. The pain signals will continue to be sent to the foot and result in phantom leg pain.

Never apologize about venting, we all have done it at one time. I find it helps to be able to vent to people who know exactly what you re going through. I hope you were able to get some sleep.

Hi Joe,

Sometimes it takes more than one try to find the right pain doctor. I wasn't impressed with the first two and only saw each of them once. I have been very happy with the third doctor and plan to keep him.

The inability for them to make an appointment for you before your meds run out is concerning. Can you get in with someone else in the practice? If not start calling around. You need to be secure in the knowledge that you'll be taken care of...

Can you clarify what you meant when you said "my doctor saw me two minutes and said I am getting...." That sentence cut off and I'm not sure what you meant - better, worse?

Two things concern me - that you say you push too hard and you still have the bone stimulator. This may not be the best combination. Is your ortho still involved? You had a major re-do on that foot and if your hardware isn't seating due to overuse that's a problem. If it doesn't seat properly it will cause other issues. Follow up x-rays will give an idea on how much bone your are depositing (or wearing away) if you haven't had one in a while. Don't make things worse by pushing through if you haven't healed properly yet.

If you never had any nerve conduction studies they might be helpful if your hardware is in a place that imperils any nerves. Your ortho will know from the placement if this is warranted and can order it for you.

Challenging yourself is okay if there is no medical contraindication to doing so but you don't want to perpetuate your pain cycle by overdoing all the time. Personally I found in the beginning that I had to really, really pace myself. Overuse and too much dependent position contributed to swelling that made things worse for me. This can be especially problematic after foot surgeries and can go on for a year depending on the procedure (even without CRPS). Personally exercise in the pool helped me stay active and build strength while keeping swelling down.

I understand thoughts that you might be better off without your foot but what the others say is accurate. It won't solve anything. I had a negative relationship with my own foot for some time that I had to actively work to change. I decided that it wasn't going to heal if I kept wishing I didn't have it. So I made a point to be very loving and tolerant of my foot, an underappreciated appendage if ever there was one. Whether it impacted my healing I can't say but it did impact my attitude which probably helped me in multiple ways.

I hope you find relief and healing soon. Take care and be kind to yourself and that foot okay? Don't give up on improvement. Your poor foot has been through a major ordeal and even without the complication of CRPS would need time (more than you want to give) to heal and settle from the surgery and adjust to the mechanical changes from reconstruction.

It was supposed to be better he looked at and said that swelling was down so it was getting better but that was at 7 in the morning after wearing compression sock all night but to rushed to hear it wit the bone stimulator one of the joints looked soft in a ct scan guess i am just frustrated

Its not better it might be dark purple today or as big but it still numb and burns and i cant control the movement in my foot but he said u are all most there here a new prescription and i say but the medicine is makeing me stupid but it helping so i take it and stare at my tv all day zoned out waiting for my next appointment and then. repeat that has been the last 7 months i used to be super active working painting firetrucks 60 hours a week (got let go ) hunting fishing with the kids now just wondering if i will ever get back to any of it

So sorry to read your posts and what you are having to go through.

Great support and suggestions from the other posters. I have SFN so I feel some of what you are going through.

Take care and please keep us posted.

Debi from Georgia

Joe,

It is natural to get frustrated when the process of healing is so darn slow. Try to hold on to ANY improvements that you've had. ie: it is discolored slightly less or for less time in the day, swelling is improved, bone density looks better than before etc. Maybe you couldn't tolerate compression as well before...Recovery is different for everyone but my own improvements came very slowly. Sometimes I know I was just holding steady. I had muscles in my foot that were unresponsive and atrophied. That foot is still a bit smaller but is much closer to normal than before and moving well. Improvements come, just slower than anyone wants. You may need meds for a while but that doesn't necessarily mean forever. It is hard in the beginning because you don't know where you will end up. Channel your energy into taking the best care of yourself as you can.

You might consider asking your doctor about biphosphinates. These osteoporosis drugs help you lay down bone (and stop resorbing it). They also have an action with CRPS that is unknown but does help. Alendronate (fosomax) is oral and had some positive studies with CRPS. Pamidronate can be given as a one time infusion and has also been used.

Hang in there. You could get some of your activities back (maybe modified but nonetheless) so don't give up hope yet.

hi joe. i am so sorry you have rsd but hope you can find a dr who can provide some relief for you soon. i have had rsd for over five years now and starting having flairs after the first few years. i am always in pain from rsd but it is so much worse when i get a flair. they usually last one to two hours (though i have had a few that lasted all day). i just take my breakthru gabapentin and painmeds that my pm dr prescribes to me. i see him every three months (sometimes sooner depending on my pain levels. if he is not available then he has a back up dr to see me. if i were you i would find a pm dr who understands rsd more and can prescribe meds that may help manage your pain and flairs better. the side effects subside a bit after a few weeks and to me are well worth experiencing if it helps ease the constant burning stabbing pain i always have in due to rsd. i put the scs on the back burner as a last resort because i am afraid of getting an invasive surgery for fear of infection and more spread with rsd, but everyone has their own opinion on that. you have to do what you feel comfortable with and what works for you. whether its a new approach to manage the pain with meds or pt or a new procudure. and you should have a pm dr that you feel comfortable with too and that you know will be available on a regular basis to help manage your rsd pain because rsd is a constant pain that needs constant attention in managing it. it doesn't take any breaks so in my opinion neither should the dr who is treating you. i am not a dr and these opinions are based on my experiences with rsd. i hope whatever you do that you will find a pm dr who can help manage your rsd pain. soft hugs to you.