The original injury was a grade II sprain after an incident at work (grocery store) moving a very heavy pallet down the inclined loading dock (ankle turned over with 1000 pounds of weight against me, side of foot smashed into pavement and was clipped by the pallet as I dove out of the way). This happened in May of last year, and my Workers Comp case was opened and accepted. It was standard sprain from what I can tell, have had sprains before (never in this ankle, right ankle), no breaks of bones, no full tear of ligaments or tendons, there was plenty of swelling, couldn't bear weight for a few weeks (had to use crutches), was put in an air brace, and I was sent back to work after about 3 weeks under terms of light duty, taking naproxen, and wearing my air brace. In hindsight, the original injury could have been a lot worse if it wasn't for my quick reaction to get out of the way of the rolling pallet after turning my ankle. But unfortunately, the story doesn't end there...

I had a continuing problem of weakness in the ankle and it would roll over quite a bit, causing pain. Even walking around the house, it would suddenly turn over and I would feel pain and then numbness. I went to physical therapy for strengthening exercises, but it didn't help much. Then, the tingling and pins-needles feelings started coming on, randomly throughout the day. This was around 3-4 months after the original injury. I was concerned and started seeing an ortho doctor to address the ankle weakness and the tingling/pins/numb sensation. He tried MRI first (nothing except for joint inflammation), cortisone injection (no relief), and some anti-inflammatory drugs, but the swelling, weakness and discomfort persisted. They also gave me a compression type brace to wear around my foot to keep it from rolling over, which I still wear to this day. The discomfort of the pins and needles and numbness started turning into painful burning sensation that would get worse in the evenings, especially on work days and after lots of walking. I first heard "nerve damage" mentioned by my ortho specialist. He did one more set of x-rays (negative) and then referred me to an ortho surgeon.

The ortho surgeon first examined me, said it sounds like nerve damage, and started me on Gabapentin. I noticed negligible relief, and as they upped the dose the side-effects became intolerable (confusion, blurred vision). My job was a grocery store and I was still working, standing on the foot for 8 hours. The burning pain would become so intense sometimes that I had to go home early, or call out beforehand. I recall one time I had to run to chase my dogs before work, and I was keeled over in pain radiating up my lower leg, had to call out for a few days. I got put on Lyrica but couldn't tolerate it, blurred vision and confusion were too bad and didn't fade with time, so they told me to stop it, and put me on Elavil. I had been having trouble sleeping at night, especially after the work days, due to burning pain, so the drowsy effects of the Elavil were welcomed, and I took it for months mainly due to this reason, even though I didn't get any pain relief from it.

Then came a major turning point. I was being seem by my ortho surgeon, and after seeing that the meds weren't working, he suddenly came back with some needles and said we're going to try a nerve block injection, to diagnose, and also to provide pain relief. It was an unexpected surprise, but I was ready to try anything, so I gave him the OK. This was in mid-February 2013. He injected my foot/ankle a few times, getting the main nerves, and it stung, but I noticed the numbness almost instantly. Well, I had the best work week since my injury, was able to go 100%, had minimal burning pain, mostly numbness, which wasn't exactly comfortable but it was better then pain. Then it happened, about a week I was carrying a box, and I got this horrible shooting electric pain from my ankle up my leg and along the bottom of my foot. I shrieked and dropped the box, holding my leg. The pain didn't pass for 20 seconds. I had some shooting pains in the past like this, but this was a whole new level, unbearable pain, the kind that just steals all your attention. I really struggled with this and started to get very anxious as to when the next spike of pain would come. I couldn't work some days, had to go home early some days, it was embarrassing, I went from one of the hardest workers to incapable very quickly. After a night working in the cooler and having about a dozen spike pains, I had one that almost sent me to the ER. I went home and had my first week or so off-work since the initial injury. The numbness relief was subsiding and the burning pain was coming back in full force, and I was getting shooting/shock pains throughout the day, and they would wake me up in my sleep. It was torture.

I started keeping a journal documenting my pain level and events around the time of the nerve block, just in case I need it for reference.

On top of that, I started having marital problems, my wife and I separated in early March. I started seeing a psychiatrist, who put me on Cymbalta, which is supposed to help with depression and chronic pain. I have a hard time remembering the effects of this drug because there was so much external stress in my life in this month, just remember it numbed my feelings, but didn't help the pain noticeably, and then I couldn't refill it or try to go to higher doses because it was too expensive (no generic), and my Worker's Comp refused to cover my psychiatric care and meds.

I was getting desperate. I tried a 10mg oxycodone pill from a friend, and it was the most pain relief and energy I'd felt in a very long time, but then I got nauseous and threw up. My next appointment with my ortho surgeon, I told him about this drug, but he said it's too strong, and he put me on Norco 5/325, Diclofenac and Lidoderm patches, and upped my dose of Elavil to 25mg 3 times per day. He also ordered a Nerve Conduction Test and EMG, which came out negative. That was the worst news ever, I was getting tired of being in the dark as to what is causing this pain, and it caused me much anxiety and depression.

I got put on Remeron/Mirtazipine by my psychiatrist and tried it for almost two months. It really knocked me out and helped me sleep for the first week. I had to quit the Elavil because the two together made me a zombie all day. I never noticed any pain relief from Remeron, and it started to make me jittery, eat too much, and extra anxious, so I stopped it. I did get some relief from Lidoderm patches and Norco, and so I could work, but I got into a vicious cycle. I would have to take more and more Norco just to be able to stand the whole shift, but the pain would override, and I would get too incapacitated and spaced out from the pain and meds to be able to work. I would push to the limit, and then one day it would go over, and I had to stop, get a doctors note, take some time off, and quit taking opiates. First it was 4 eight hour shifts, then 3 eight hour shifts, then 4 four hour shifts. I took about a month leave after not being able to do the four 4 hour shifts, then went back and tried 3 four hour shifts per week, absolute minimum. I couldn't even do this, the pain was just getting worse and worse. I got sent home by my boss (this was in early June) and haven't been back since.

A nurse case manager was put on my Workers comp claim around this time, which added to my anxiety, because I read horror stories about how they try to push you too hard and how they mostly work for the insurance company. She was okay for a while until recently (I'll explain later). My last appointment with my ortho surgeon, I mentioned how my sock and bedsheets are starting to cause immense pressure/grinding sensations on my foot, and he said he thinks I have CRPS. I went to Pain Clinic (took forever to get in), and after examining, he diagnosed me with CRPS. He put prescribed a Ketamine-based compound prescription cream. When my NCM was talking to him, she asked "how long?" and he said a year minimum, if everything works. I burst into tears. How can I handle another year of this, especially if it gets worse? It was and still is a hard reality to face. He also discussed more scary treatments like lumbar injections and spinal cord stimulator if the cream doesn't work.

Well, I've been using the cream to the max, 4 times a day usually. It knocks out about 30% of the burning pain, but it hurts even worse when it wears off. I'm worried I'm getting dependent on it, that it's just masking the pain while it gets even worse. However, I wouldn't even be able to tolerate the physical therapy I'm doing if it wasn't for the cream knocking out that area a bit. I'm doing PT 3 times a week now. My last doc appointment was very stressful. At first, it was a relief. They examined again and said it's looking slightly worse, and noted a purple line that looks like a vein going up the front of my leg toward the knee, which my PT also noticed and is worried about. The hair has stopped growing on and around it. It doesn't hurt yet, but is this a sign of spreading, or is it just a vein? Anyway, they wrote me out for 2 months out of work and told me to focus on exercise and PT, but my NCM flipped and fangled another note of "light, sitting only duty" to make herself look good. I felt helpless to the bureaucratic BS, but it seems to have worked out now, just added extra stress, more running around to get my work note in so I can get my check (I'm living on workers comp benefits right now).

I have all the hair around my upper ankle, and there is a area from the upper ankle to the top of my foot that is red-purple colored, and extremely sensitive, in some spots more than others. It feels like I'm standing next to a fire. It's getting harder to wear socks and shoes for a long period of time. I just bought softer sheets, 400 thread, so I hope that helps.

I have had immense depression from the pain and not being able to work, it has thrown me way out of balance, as I have had a job since age 13. I graduated from college, and had plans to make a good career out of where I am working. I hate being a drag on the system and I want to work so badly, but don't even think I could do a sit down job. I have had dreams about doing physical labor. I have had to give up most of my hobbies, including hiking, mountain biking, golf and other sports, which has been devastating. It's even hard to do yoga, or even sit at my desk, and I can only walk short distances without a cane. My bedsheets feel like grinding needles on my ankle, I have to put on ketamine cream before bed, wear a sock and leave my foot outside my covers. Even the breeze through the windows feels like hot needles. I'm losing muscle mass (especially at the site of the injury). I have had immense anxiety too, about my future, about this injury getting worse, and about recent events with my Workers Comp case. I'm currently on Effexor and Klonopin from my psychiatrist, and have been seeing a psychologist (therapist) once per week, which has been helping. I'm also going to physical therapy 3 times per week, which has been difficult but I haven't missed an appointment yet. They are mainly working on desensitization and light strength at this point.

Well, I think that's enough for now, put down as much overview I could without getting into too much detail.

I need as much help and advice as I can get. Is this going to get worse or spread? What can I do to reverse this injury or get some more pain relief without taking more opiates? Any advice about what to look out for with Workers Comp and my nurse case manager would be appreciated too, what should I expect? Researching about CRPS is very stressful so I hope I can get some good support and advice from other's experienced with it.

noticed a mistake and I can't edit my post...
"I have LOST all the hair..."

I want to start out by saying that I am very sorry for all that you are going through. You have had an incredibly tough time and I know what you are going through because...well...your story sounds a LOT like mine.

I know it is scary and I know it's a lot to take in right now. You've been bounced around a lot, you want your life to be normal again but it's not, you've got the stress of dealing with work comp and a nurse case manager and work...all on top of this horrible pain that you can't seem to get under control. It's a lot to deal with.

I wish I had some magical words of wisdom that would change your life...but I don't. All I can do is give you advice based on my OWN experience which may or may not be helpful to you...though I hope sincerely that it is.

1. Get an attorney to help you with work comp if you do not already have one. Seriously...this is important. I don't know where you live, but work comp laws are different in every state and you need someone who knows the laws is your state to back you up. Work comp attorneys do not get paid out of your pocket...they get a percentage of your eventual settlement or award amount from work comp which will be SIGNIFICANTLY higher if you have an attorney than without one...so you are losing nothing and gaining everything. You CANNOT TRUST WORK COMP...EVER. I hate that this is the world we live in but it is. They do not care about you...no matter what they say...and your health and well being will suffer even more than it already has because of them. An example of this...you are not able to physically or mentally handle work right now which your doctor agrees with because they took you off...only the nurse case manager convinced them otherwise. I don't know the laws where you are but here in IL I know that the nurse case manager CANNOT talk to your doctor if you don't want them to...PERIOD. The only access they have is to your medical file and notes...unless you give them more access. I didn't know this until I got a lawyer and WORK COMP most certainly didn't let me know my rights. And here was this pushy nurse invading MY medical appointments and INTERFERING with MY medical care to my detriment...and I didn't know my rights. GET A LAWYER.

2. If you are still wearing a brace...stop. Immobilization is the worst thing for CRPS. If you are using any ice in the treatment of your CRPS...stop it now. What you need to do is find the things that give you relief...even slight relief...and use those to your advantage. Also learn what triggers the pain (cold, touch, air movements, etc) and try to avoid those things.

3. Physical therapy is important and you should do it EVERY day. If your physical therapist has not given you exercises to do at home every day then ask for some. You need to move every day. However...and here is the difficult thing...you have to move and do exercises that are not too hard on your CRPS. It's going to hurt but you should never push yourself so far that you are unable to function afterwards. There is a balance that you will need to find between moving and resting. This is a SLOW process and it may be months before you see a noticeable difference in the pain or function...but it will come. BTW...side note...work comp will HATE this and is one of many reasons why you do not want them making medical decisions for you...those should be left up to you and your doctor.

4. Back to work comp...do NOT settle or even think about settlements until you are 100% better or at least back to life as normal as it will ever be for you. In fact, I would say generally you should think of settlements as a very bad thing for you period and you should not even think about them for several years until your doctor has said you are as good as you will ever get...and if you still need medical treatment in that state then you shouldn't settle. Your lawyer SHOULD explain all of this to you...but just as there are bad/corrupt doctors out there, there are also bad/corrupt lawyers out there. If you see one who says anything about a specific amount you should settle for while you are choosing one...walk away. Your HEALTH and WELL BEING should come first and any discussions about settlements or awards should come long after those two things are taken care of.

5. Don't trust anyone at work. Your words and comments will be taken out of context and used against you if they can. Don't let anyone provoke you into quitting and don't let yourself get put into any situation where you can be fired. My employer tried to bully me and were awful to me...but I never gave in. I learned what my rights were, kept a level head, and tried to keep my focus on GETTING BETTER. That's where your focus needs to be right now and just remember that once you GET better then you can go back to work and be focused on work things. Right now you won't do yourself or work any good by trying to push too far too fast.

6. Make sure...before you make any decisions about treatment options...that you have researched the options and know both the possible good and bad consequences of said treatment. If you will not be able to handle the worst case scenario when weighed against the possible benefits...then don't do it. You will be desperate (you already are) and you will pin all your hopes on a treatment the doctor says might take your pain away...and then if things go wrong or don't work out you will be devastated and possibly in much worse condition. I'm not saying you shouldn't take risks...but whatever you do make sure you do it with eyes wide open. Ask hard questions both of the doctors and yourself and make sure YOU are being 100% honest with yourself and your doctors about how you feel about a particular procedure or treatment.

7. Ask a lot of questions. Ask them here, ask them to your doctor, ask them to yourself and seek out the answers. You need to be the most informed person when it comes to your CRPS and treatment. You will run into many people along the way who just don't get it. These may be people in work comp, they may be people at work, they may be friends and family...they may EVEN be doctors. You have to be the one who knows your CRPS better than any of them and protect yourself from people and situations who will only make you worse. I miss the blind faith I used to have in doctors...but that has gone away after many bad experiences with people who not only couldn't help me but also made me worse. Stand up for yourself and don't be a victim if you can help it (most times we can't...but the more I learned the better prepared I was to avoid people who would only make me worse).

The truth is...and I hate to say this or to scare you...but the pain might not get better. It might get worse. You may or may not find medications that help you with the pain. What then? Are you going to continue to FIGHT to take back this life that is slipping away from you or are you just going to give up and let it go? I HIGHLY recommend fighting because despite the pain...you CAN fight to have a more normal life. You are NOT your CRPS...you are YOU and you HAVE CRPS.

It sucks that I am in pain all day every day. It sucks that there are many things I used to be able to do that I can't do anymore. It sucks that I have to convince myself every day that it is worth getting up and pushing through that pain...but it IS worth it. I was at a point where I was in a wheelchair and couldn't stand or walk anymore (obviously wasn't able to work in that state either). But I fought through it. I am now walking (with a walker...but it's still walking) and I am now back to work 50+ hours a week in a job where I am on my feet all day (that I loved before I got hurt and still love now). I have had to make HUGE adjustments...but all the important things are still there in my life.

There is a light at the end of the tunnel even IF the pain doesn't go away (and I hope it does...you should keep trying for that)...you just have to make up your mind to FIGHT for it. You have to make up your mind each and every day that you are GOING to do this...that you are going to do the physical therapy...that you are going to keep searching for medical treatment...that you are going to do whatever it takes to fight this monster that is CRPS and take your life back.

It will be slow and it will not be easy...but you'll make it if you keep your eyes focused on the end goal.

I'm sorry that there is no magical pill or procedure that will just make you better. Getting "better" is a real struggle that just takes time. You have to work at it to find those things that make you feel better and those things that make you feel worse (so you can avoid them). The hardest part can be the balancing act between things you want to do, things you can't do, things that hurt to do, and things that you NEED to do. You will get there...it is not hopeless even if it feels that way sometimes.

Take care of yourself. Sorry for the long post...I don't mean to sound so preachy. These are just my own thoughts and opinions based on my own experiences. I hope at least some of the advice can help you in this journey. I don't like to hear of anyone suffering with this condition.

Hi VividDC, I feel for you so much, this is a cruel cruel condition and it does indeed mangle your entire life....BUT as catra says, you can get some stuff back again, you can adapt other bits to get around some of your new limitations, and believe it or not - you can enjoy your life again. Not quite as much as you did perhaps and not in the way you had dreamed and planned, but it can happen.

Catra gave you excellent advice, I won't replicate it if I can help it lol!

One thing I didn't notice in your post or Catra's was any mention of Epsom salts. They are surprisingly good at helping with CRPS burning pain. Get some unperfumed salts (Internet or good chemist) and use them in a warm (not hot) bath. Also, I personally find them best wrapped in some plain linen dampened with ordinary tap water and placed on the burning area. It roughly works by blocking the calcium channel pain receptors I seem to recall (sorry if complete garbage lol). Whatever, they do help so give them a try

I totally get your feelings of loss and grief, frustration, sadness and anger at the whole crazy roller coaster. I have just started my third year with this (mine started after a simple knee arthroscopy) and I am only just feeling as though I have any kind of control for periods of time. I'm not back at work, I had to leave my job because it was too physical and for two years I could hardly walk ten yards without help, but I've started working for myself and controlling my own hours. I can't earn what I used to though, and I'm very aware of how lucky I am that my husband works full time.

I also sleep with my leg out of the covers, and I put a spare pillow at the end of the bed under the foot of the quilt so that it raises the end off my feet. My CRPS spread from my knee to both feet, my whole left leg, and my left arm as well now. But I've been very gradually increasing my activity levels from very basic exercises, to more walking etc. in the last two months I've ditched my wheelchair and crutches, and today I actually drove myself to work (only a couple of hours) and back, and did a small food shop alone. Amazing, I wouldn't have believed it 6 months ago. Felt great.

I'm not trying to show off, I'm very aware that my recent progress could slide backwards quickly, but I'm fighting to keep what I've found. I'm not quite sure how I've got here to be honest - but all you can do is keep fighting and trying to keep bits of your life from disappearing completely. Every aspect of my life has been affected negatively, my relationships with everyone from my husband and children to friends and close family. No one but another sufferer can 'get' the true awful reality of this thing. The pain and psychological scarring go very deep, but I do believe that you can find some calm amid the storm, but it takes a long time, and even so, I bet we all still have days where the despair and fear just get you anyway.

I suppose I'm trying to say that all you can do is fight and keep learning about the condition and your body, stuff you can do, stuff you can't now... But don't ever give up because after two years of wondering if there was going to ever be a point again, I am finding some relief from the worst of the pain and disability.

I do so hope you can find some real help and peace with this, and find your way through. You are obviously so strong to get this far and deal with everything you have, so be proud of what you are doing every day - because on here we do understand how hard just getting out of bed is.

Good luck and I hope you have a better day tomorrow, and a bit better every day after. You deserve a break.

Bram

Thank you so much for this advice, it is really helpful. I live in North Carolina and NCMs are allowed by law to talk to your doctor, with you also present, after the appointment, so there was really no avoiding what happened last appointment. I have spoken to a few lawyers in the past at the advice of others (mainly co-workers and a family member), but they all told me they don't think I need legal representation at this point. I think I do now, so I will make some calls tomorrow. I've been keeping a journal since February at the advice of a friend, so I've been somewhat preparing for an attorney should this keep getting worse, which it is.

...about the part of your reply that I quoted, are you sure about stopping wearing the brace? My PT mentioned he wants to try to get me out of it, but said I should keep wearing when needed. I can walk short distances around my apartment CAREFULLY without it if not in too much pain, and in my apartment without it, but my balance still feels off and my right ankle is soooo weak. Whenever I have to go somewhere that's not right around the house, I usually put on my brace and have to walk with a cane if it's not a short distance or if the pain is already too intense. It's VERY sensitive to touch and air movements, I haven't experimented much with hot-cold except for the desensitization at PT, the cold part always hurts tremendously. And I do have exercises to do at home and am able to do them for the most part, it's quite rare that I'm completely bedridden but it's happened a few days lately.

Thanks again, I'm a very diligent person when it comes to research and my recovery so if anyone is going to beat this CRPS it's me, but it's definitely hard to keep my spirits up when I never seem to get a break anymore. I can already tell joining this forum was a good move.

I agree with stopping immobilisation - not using the affected limb is a definite no-go for CRPS as it makes the pain worse not better.

BUT if your ankle is still feeling very weak, and you are using it for support, then I wouldn't advocate just abandoning it. The last thing you need is another injury! I would say that if you are going out somewhere or just need to get things done, then wear the brace - but as soon as you get home again, take it off and (if you can) do some gentle rotation and flexing of that ankle on and off as often as you can during the day. Little and often being our watchwords here lol That way you keep the support for when you need it, but get that ankle joint moving to counteract the pain and stiffness with the CRPS.

Leaving the support off suddenly and completely with an already weak joint might lead to a mishap. Try to get a balance between support when you need it, and freedom of movement for that ankle when you can. You can gently try walking on it with something to hold on to, but if it hurts too much then just go for the non-wb movements to start with.

Talk to your physio if you have any concerns - sounds like she knows the brace needs to come off, which is the important thing in the long-run. Getting there needs a careful approach....

Good luck,

Bram.

I am sure about the brace...especially if it's a stiff on that really immobilizes. If it's really weak then you may need some support...so maybe try a flexible fabric one that allows SOME movement but also provides some support. Even better though (in my opinion) would be to use crutches or a walker for support to give your ankle the freedom to move.

I went through (after my initial injury which was a sprain after accidentally hitting a dock plate at work) having an air cast, a gel cast, and an immobilizing boot. I will tell you that I was fooled into thinking these helped me because I was able to walk a bit more and pain was slightly less...but I kept getting worse. Immobilizing (even if it immediately feels like it is helping the pain) actually makes the pain much worse over time, meaning you can use it less, which means the pain gets even worse, and so on. It's a snowball effect and is likely why you are feeling it is so weak now.

Obviously you should discuss anything with your doctors first as I don't know your whole medical history...but as soon as I was diagnosed with CRPS the doctor told me to stop wearing the immobilizing boot immediately, during that appointment, and never to put it on again.

I have a small fabric brace that I will wear from time to time that serves two purposes:

1. It protects my ankle from air movements and cold if I want to wear shorts or something where it is not covered by the pant legs.

2. If I know I will be walking on uneven ground (like spending time outdoors) then I put it on to protect me from rolling it bad or having another injury.

Bottom line...immobilization equals bad news. IF you have to wear the brace I would literally ONLY use it when walking, take it off when sitting or for physical therapy, make sure you have lots of sitting exercises to do at home from your physical therapist. This will be key to getting you moving even when you can't do standing/walking exercises.

Also...have you tried ultrasound or stim at physical therapy? One thing that helped me tremendously when I did the outpatient physical therapy was to have ultrasound treatment at the beginning of the session and stim with HEAT at the end. I usually left in better shape than when I went in. Now I have an ultrasound unit at home that helps as well as a portable TENS unit I can use to help the pain now. These don't help everyone but if they have it at your physical therapist's then it might be worth trying. Remember to stay away from ICE...this is very important. Heat doesn't help everyone but it helps most...ice almost always causes much worse pain and can even lead to spread.

Keep asking questions...this site has saved me so many times I cannot even count. Don't know what I would do without the people here...they help keep me sane.

This is the exact brace I use: ** - it's not very stiff and I don't wear it tight, but it does help keep my ankle from rolling over on uneven surfaces. I will talk to my doctor about it.

I've tried stim at PT a few times and it didn't bring noticeable relief. I'll ask about ultrasound today. They have been doing desensitization with hot then cold, hot for 3 min, cold for 1 min, like super cold. From what I gather you are saying this is not a good idea? It hurts really bad when the cold is put on. I will ask him about this today as I have an appointment in 3 hours.

I mentioned this in the original post, I have this vein-like purple line going up the front of my right lower-leg toward my knee that has only shown up in the past few months. I don't have it on the other leg. It doesn't look like a normal vein and it's pretty much the same color as the CRPS area. The hair on and around it is gone. It doesn't have the same hyper-sensitivity of the ankle area. Any idea what this is? Is it spreading? I will try to upload some pictures later.

O...M...G... as far as I understand it, hot and cold contrast therapy is STONE AGE thinking as far as CRPS goes. You need them to stop that straight away. It used to be considered a good therapy to get your skin used to feeling temperatures more normally - but the extremes of it are bad bad bad long-term, and it is not recommended now (it can even cause spread). The clue is the bad pain with the cold - with CRPS, anything that causes a bad spike in pain must be avoided, from intensive physio to super-cold water...

That vein thing sounds weird, I can understand you being worried about it, especially if the hair around it has gone, as with the other affected areas. All you can do is ask your doc and physio what they think, and take it from there.

Good luck with your appointment, I hope it goes well and they can come up with some new treatments for you!

Bram.

Yes...if it were me I would stop the hot and cold contrast therapy IMMEDIATELY.

Desensitization therapy can help tremendously...but it can't be done with cold things. You need to normalize the sensation which can be very painful but does not cause the long term harm that ice/cold can. Proper desensitization is about exposing you to different textures and stuff like that until it normalizes the sensation (or at least makes it more bearable). It took a few months of it to get me wearing more normal clothes (and on bad days I can't stand anything touching me)...but that was worth the pain for the normalcy. Not everyone will agree on that.

But the ice/cold water thing...stop doing it.

My first visit to my outpatient physical therapist (shortly after I was finally diagnosed) she used stim and ICE after the first appointment which was horrifying. I did some research and when I went back next time we did stim with HEAT and that was very helpful in lowering my pain levels.