I am lucky to have a very personalized and understanding physical therapist. We stopped the hot/cold therapy and started ultrasound. I still can't tolerate the wand over the sensitive spot, so he has been focusing just above it where it appears that it might be spreading. Well, it's only been one try so far, but I didn't notice any relief yet. The different textures is something he has been doing all along, along with pressure from hands, very hard for me to tolerate still. Today I had a very, very bad shooting pain while squeezing a ball between my feet that didn't pass for half a minute. He felt the back of my calf and said it's extremely tight, and it's very tender to the touch. He massaged it and put heat, seemed to help.

I'm on Effexor for anxiety and off-label for pain, any experience with this? I am not tolerating it well and it's just making my anxiety worse with disorganized thinking so far. I am wondering if the pros outweigh the cons, my research findings have been bleak.

I am changing my sheets tonight to 400 thread count, hopefully it helps. I am also going to buy a "mushie" pillow for bed time to rest my ankle on outside of the covers.

Good plan to try things out - you WILL find things that help to ease your symptoms a bit and make life easier...

Try asking your OT for a bed frame - it lifts the covers off the end of the bed, so that the sheets etc don't touch your bad bits. I put a pillow at the end of the bed to lift the quilt up - I sleep a lot better these days (mostly) lol!

The textures desensitization can be difficult, but it is worth persevering, it can make a real difference to what clothes etc you can tolerate. But....if it makes you very sore, then you should dial it back a bit until your skin accepts the texture without pain. It's a delicate balance between increasing tolerance and not hurting yourself more.

Good luck with it all...

Bram.

I'm sorry you are dealing with this.

I totally agree with continuing with therapy and doing exercises at home. I am so thankful for my therapist. I went prior to my RSD diagnosis, but she was the first to recognize there was a problem outside of just surgery recovery. I was diligent with doing my at home exercises.

If you are still interested in taking Cymbalta they offer an assistance program where they will pay for your medication.

Sounds like you have a good physical therapist that is willing to work with you and learn...that is very good news. Understand that it will just take time with the physical therapy. My second round of physical therapy was with a nurse who came to the house for at home physical therapy. We started out VERY small with very simple movements while I was sitting for therapy. My ankle is very sensitive to touch (and cold) so we stayed away from any therapy that involved weights on the ankle, bands on the ankle, or basically anything that TOUCHED my ankle. We were very focused on function so it was about getting me moving first, then getting me weight bearing, then getting me walking.

I know you aren't completely immobilized like I was the second time around...but one thing to focus on is about PROPER movements. No limping, no awkward walking with the crutches, etc. You want to walk NORMALLY and should be focused on only doing as much of it as you can do WELL because when you aren't walking normally you are stressing out other parts of your body. Every exercise was focused on that goal and with every exercise I asked the question: what is this exercise doing to help me meet my goal? The physical therapist should be able to give you an answer to this question which you can use to help motivate you to do it an work through (a reasonable amount of) pain. I had other goals besides walking too...my balance was terrible and I also had spread to my upper body so I had issues there to work on as well. Other things you are dealing with (from what I have gathered) are things like strengthening the ankle. Remember that if an exercise causes you so much pain that you can't function after or can't go on...then it is too much for you and your physical therapist should be able to either give you an easier exercise (if it's because you were doing an exercise that was too advanced for you) or a different one (if the exercise was one that flared up one of your triggers like touch or cold).

Remember too that any equipment you use at therapy can get cold...anything metal or plastic or whatever...depending on the temperature of the therapist's studio. That doesn't mean you can't use some of it...but you might need to do something to offset that...like wear socks (if you can tolerate them) to protect you from the cold. I often have to wear gloves to do certain things (always wear them at work) because touching metal or plastic (especially in the summer when there is air conditioning on everywhere) will cause a flare up in my hands/arms. The gloves themselves hurt to wear...but they allow me to do so much more that it is usually worth it. At home I only wear them for things like taking stuff out of the fridge/freezer...we keep the temperature pretty warm in my house so it's not necessary as much as when I go out and have no control over that temperature.

I didn't think the ultrasound helped a lot at first, but what I have noticed (especially since using one at home) is that it seems to extend the relief period I get from other treatments. For example...if I use the ultrasound after my hot bath with Epsom salts in the morning I get longer relief than I do with just the hot bath with Epsom salts. It also seemed to me when I was using it at physical therapy that using the ultrasound at the beginning of therapy with stim/heat at the end was the best mix for me leaving in less pain.

None of these things have been successful in taking the pain completely away...but all the little helps for the pain add up to a tolerable day.

I can't help you with the Effexor...I haven't ever been on that one and I have (at this point) dropped all meds except clonidine patches and lidocaine cream. I had some bad interactions between meds that really made me sit down and think about whether the risks and long term effects of the meds were worth it to me for the small relief (and it was always small) that the meds gave me. I ended up deciding that it wasn't worth it. If the side effects of a particular med are not working for you then you should talk to your doctor about trying something new. There are lots of options out there.

When I was taking meds in the beginning, it was really about finding the right COMBO of meds. I took Lyrica, Meloxicam (anti-inflammatory), Tramadol (pain), and doxepin (anti-depressant...for pain). This was the best mix for me and it did help keep my pain level down to a 5-6 most of the time. Unfortunately there were some issues with work comp and I ended up running out of meds because they wouldn't approve a doctor's visit...and then my pain just got so out of control even that mix wouldn't help anymore. Tried lots of other things that didn't help much and then had the bad reaction that ended up with me off of everything except the clonidine patches and lidocaine cream.

If something isn't working for you...don't be afraid to ask your doctor to switch. I will also say that when I first started Lyrica that it made me VERY tired...but that passed after about a week as I adjusted to it.

Remember that we are all different. We can talk about our own experiences and what helps us out day to day and the best hope is that through that you can find a few things that work for you. I learned lots of little things to help with my pain on this forum...one from one person, a couple from another, etc. This also takes time.

Sorry for the long posts...everyone tells me I am very long winded. I just want to share as much as I can in the hopes that some of it at least might help you.

I'm accepting the reality that there is no magic bullet, my goal right now is just to have more tolerable days. My best days in the past 7 months have been a 6/10, and that was with hydrocodone, lidoderm patches, diclofenac, amitriptyline, and rest. It's usually much worse, and I can't seem to find a med combo that works for me yet. I have had a really hard week with pain, deep aching, burning, squeezing, even when nothing is touching it. Color keeps changing from pale to blotchy red to deep purple. My last appointment at PT, I was sitting, squeezing a ball between my feet, and I got this horrible shooting electric pain that went up the back AND the front of my leg, I almost fell out of the chair. He focused the rest of my appointment on massaging and heating my calf because he said it's really tight and that there might be a nerve entrapped in there. I am so worried that this is spreading because I can feel the deep aching and some hypersensitivity along that purple line going up my leg, the hair is going away there too. I feel like I'm going to go crazy sometimes from the constant burning. Also, my ketamine cream seems to be losing effectiveness, I have been using extra and going back to lidoderm patches a few times the past week. Walking my dogs up and down the short road by my apartment is getting to be excruciating, even with crocs, just the breeze feels like stabbing hot needles. Trying my best to stay mobile and work normally but it's a real challenge, I have to use a cane and my brace most of the time.

I called my psychiatrist about Effexor because I am not tolerating it well, but he still hasn't returned my call. I also called a lawyer I was recommended to contact, they will call me back soon.

My aunt lives in the Baltimore area and works at a Pain Clinic, so she has been contacting me and talking to her doctors and trying to help. Their consensus, as well as my own doctor, for the next treatment attempt is sympathetic lumbar blocks. Have any of you had relief from these? Do the benefits outweigh the risks? My research so far has been inconclusive; I have seen it said several places that there is no solid evidence of long-term relief. I am worried about more injections like this, because the last nerve block I got back in February around my ankle and foot really backfired on me, was a bad experience, and the pain got so much worse after it wore off. Any experience with this treatment?

From what I have heard...lumbar sympathetic blocks work the best if done within the first 6 months and then the chances for relief drop dramatically. There are many people though who get relief after that point and continue to do series of blocks to reduce their pain way beyond the 6 month mark.

This is a very common first step in treatment...unfortunately by the time many of us get diagnosis it's already past the 6 month mark.

The key with the blocks is that they work with sympathetically maintained pain but not sympathetically independent pain (I think that's how it goes). If your pain has not converted to sympathetically independent pain yet then you should get some relief.

There are other variables that can alter the effectiveness of the blocks. There are different med combos used, some use sedation and some not, some use fluoroscopic guidance and some do not, etc. Hitting the exact right spot can make a difference if you get relief or not. I will say that if you've had a block in the past and got relief from it then that's a good sign that you might respond well to this sort of treatment.

Unfortunately, not only did I not get relief from this procedure but it actually caused my CRPS to spread to my upper body (everything from my waist to my neck including both arms and hands). This is VERY uncommon and rare...but it can happen. I wouldn't let my experience put you off it but you should realize there is a slight chance that this can happen as they are sticking a needle in your spine. ANY trauma can cause spread...even from a blood draw. On the invasiveness scale this procedure is still pretty low when compared to ketamine treatments or SCS...but it is more invasive than PT, meds, TENS, etc.

As far as mobility...just do what you can. Push as much as you can but not further. The important thing is to not give up on it. On a bad day when you just have to rest there should be some exercises you can do while sitting or in bed that will keep you moving without flaring up the pain too bad. I STILL use those on my bad days (had a couple this week when I got some bad bug bites on my bad leg...couldn't hardly walk at all so did my exercises while I was sitting/laying on the couch).

Sounds like you are on the right track and are doing what you need to. Another thing I might recommend is if heat helps you, you could buy some of those thermacare heat patches (or the generic ones like them) to use during the day. I love these because I can wear them while I got about my day for relief. Just make sure they are HEAT patches and not the kind with any cooling or anything like that...heat is what you need.

Friday (8/23) I had my last "authorized" (by WC) PT appointment. It was a terrible appointment. He had students there and he asked me to talk to them about my condition even though I felt like crap. Then he demonstrated the hot-cold therapy, even though we had previously discussed that I don't want to do that anymore. I felt helpless at the time with all those people watching over me, so I just took it. The cold hurt sooooo bad. I argued with him a bit over the logic behind this treatment, then he told me it was my last authorized appointment, and that he has to report I've made no progress yet. Well as of today I still haven't been authorized for more PT, everything moves so slow with Worker's comp... really delays treatment. I still have primary insurance from my employer while I am on medical leave, and I might have to start using it more, even though money is tight.

Anyway, I've had one of the most horrible weeks of pain of my life the past week, capped off by yesterday, which was like torture, writhing around in bed, almost went to the hospital. Now today I'm even more concerned, because I feel uncomfortable electricity/tingling up the front of my leg on that purple line I talked about in the original post. It's not painful yet, just annoying, but it's how the now very painful area started. It is happening right now as I write this, nonstop, sitting or standing (laying down is a bit better). Is the CRPS spreading? What should I do? I have another appointment with my pain doc on 9/12 and I think I'll go for the lumbar sympathetic blocks even though I am afraid of them based on what happened after my last nerve block. I'm getting scared I feel like I have no control over this at all. I've been so diligent with everything and it just keeps getting worse.

Honestly VividDC, I could swing for your darned muppet of a PT What a thoughtless and unsympathetic idiot to put you under public pressure, force you to do a (discredited) treatment you had already asked not to do, and make your pain spike. If he had any knowledge at all about CRPS he would not have done those three things together. It's so hard to stand up to a medic of any type (white coat syndrome - I was just the same) but with CRPS it's important that you stop anyone whose treatment might cause you serious pain or spread. I'm not surprised you are having a tough time at the moment, but things can and hopefully will calm down for you. Try to think positively - CRPS worsens with stress and anxiety - ironic hey?

I sympathise about the WC when you are trying to get treatment, but in all honesty you are better off without well-meaning but basically useless PT. try to get another PT, but you can find examples of gentle exercises to do online (I use a good one called 'exercises for those confined to bed' from a UK Diabetes site!) - I do them nearly every day and then add walking etc according to how good I feel. Just be sure to use a reliable site and stop any movement that causes you bad pain. The first time you do a new exercise, have someone with you to help support your affected limbs if needed, and advise on your position etc. It can be quite good fun!

No one can tell you what to do to deal with this because we are all different. As a crps sufferer dealing with many medics who have no knowlege of it, you do have to take take control of your own treatment regime and maybe make a plan of things that help you (I find making a plan makes me feel a bit more in control of things, lol). If you can, give yourself an hour a day to do a 'regime' - mine is to do my exercises, try to do a meditation or just sit quietly listening to some calming music, and massage some oil into my leg muscles to help with cramps and blood flow. As time goes on you will alter your plan as you find new things that help or things that are making your pain worse. Then be prepared to be strong when asking your docs for the things you think you should be getting or want to try. It's not easy Just listen to your body and avoid anything that you know will spike your pain.

Regarding the blocks - I've read good and bad things too. Discuss them again with your pain doc before anything is done, and ask them how they make the procedure as safe as they can and minimise the risk of spread. You can tell a lot from their reaction - I had one who didn't take the idea of spread risk seriously at all, and so I never let them anywhere near me! Only you can decide, but remember that spread can happen for all sorts of reasons, or no reason at all, and any kind of invasive procedure when your CRPS is so active is a risk. When I was in the very early days of this my orthopaedic surgeon (who diagnosed me, bless him) said he wouldn't go anywhere near either of my knees (surgery or injections) while my CRPS was active, or there was too much risk of spread. I've applied that idea since, and read a lot that backs it up. CRPS is too horrible to risk making it worse, but then if it is so bad that you are desperate, then any chance of relief might be worth it for you. It's so difficult.

I really feel for you with this. I do hope things settle down for you soon and you can get some good pain relief. Good luck with everything, and keep posting

Bram.

If I had to guess...work comp is waiting for your appointment with the doctor on 9/12 before approving any more PT. I was lucky with my doctor who was overseeing my care in that she approved as much PT as I needed and didn't wait for additional appointments with me before sending on her approval for more...which the insurance company just went with.

I am SO angry that the physical therapist did this to you...especially after you guys had already discussed not doing it any more. I do not doubt at all that your current pain levels are a direct result of that horrible treatment.

If it's really bad...go to the ER...but don't expect a lot from them. If they can help break the cycle of pain then that may help you...but they're not equipped to or meant to deal with chronic pain conditions. Most of the time I usually regret even bothering to go to the ER because they just don't do much to help me...nothing really. But at least it documents that I was in enough pain to go...whatever that is worth.

I would definitely speak to your doctor on the 12th (or sooner if you can get in sooner) about this spreading pain you are having. Talk with them specifically about what you should do when you have these pain spikes, what specifically you should be doing in physical therapy, what the treatment options are, and what your goals are as far as treatment goes. Your doctor should be your greatest partner in this struggle and you need to have the sort of relationship where you are comfortable asking these questions and discussing these things...and they proving answers and being active participants in the discussions about your health.

Take care...I hope your pain levels go down soon. My first step when pain levels start to rise is a hot bath with Epsom salts, followed by some lidocaine cream or Lidoderm patches, and rest.

Well I got back in PT 3 times per week... apparently I wasn't supposed to have a lapse in care, which really aggravated my nurse case manager. I have a pain doc appointment on thursday, and I am going to write down questions this time to make sure I get them answered, mostly about the sympathetic lumbar nerve blocks. Some of the questions come from your responses, so thank you. Let me know if there is anything else I should ask. I don't know if I mentioned this, but I'm trying to avoid using opiates, especially while I am unable to work, so if you have any suggestions on what I should ask my doctor for, let me know. They have bad side effects for me and I am way too anxious about dependence. It's a trade off because the rest of my body and my mind feels a bit better without them, but I have to put up with more pain, no quick break from a pill. I am going to ask for a new compound cream with lidocane added at the advice of another doctor.

I also am meeting with a worker's comp lawyer who was recommended to me for initial consultation on wednesday. I am trying to prepare for this. Any advice? I have been keeping a journal (on my computer) since february exclusively for my injury/crps, should I send it to him? What kind of questions should I ask?

Also, I should mention that I went shopping where I am employed (where the injury happened) last weekend, and talked to my boss for a while. They re-did the whole loading dock! Leveled it, widened it, put a safety rail and fence around it. He was eager to show me so I couldn't help but think it was because of me. I felt mixed feelings... glad they fixed the obviously unsafe (slanted and narrow) dock, but wish they would have done it before my injury. Anyway, I was worried he was going to try to pull some crap to coerce me to quit, but after hearing about what I am going through, the opposite happened. He put away his notepad mid-conversation, and said that I am welcome back and they want me back whenever I am ready and able to work. I was a top employee there, always worked my butt off, so I think they genuinely want me back now that the holiday season is coming. Anyway, that lifted a bit of stress off my mind.

I can't wear socks or my brace anymore it seems, the area is way too sensitive. I have just been going barefoot with crocs and learning heavily on my cane. My ankle is very weak and it feels like I could easily lose my balance, so the cane helps. I guess it's kind of good I am forced out of the brace, because less immobilization, but it definitely made me feel safer and more stable walking with it on.