Please excuse me if I ramble but I am exhausted and frustrated.

Over 2 years ago (when I was 44), I was hit by a Jeep while crossing a parking lot (shortly after 1PM). For some reason I remember everything up until the Jeep hit me, including the pain which I felt immediately, but then everything is fuzzy and I can't tell you what happened really until I was being released from the hospital at 5:30 PM that same day. However, my memory doesn't return to normal for several days after the accident, it is spotty.

Now this is what a witness told me about the accident, I was hit the the Jeep and doubled over, I did not loose consciousness and I was complaining greatly of left sided pain immediately. The person who was driving the Jeep got out and grabbed and attempted to straightened me up and tried to get me into the drivers side of the Jeep but I was crying in pain. The witness tried to get me away from the driver and into a nearby clinic.

I had X-rays and nothing was broken and I was given percocets and told to go home. I thought maybe I was just suffering from bruises and general soreness - but, I seemed to be in a lot of pain from day one, pain which seem for the first month to increase dramatically. I was told it was soft tissue and everything would be fine in a few days, then in a few months. However, things got worse not better as the days went on. Within the first month when I started Physio, the people there noticed that my left hand was a different temperature than the right one.

All of the pain I had since the day of the accident was on the left side and in my back. I had a mixing of throbbing, burning, aching pains and numbness and tingling as well. Sometimes it's like ants running over my body but they are on fire.

I have been tried on so many meds to help but I seem to end up having a flu or flu-like symptoms and then I react to the meds with itching, vomitting and a whole list of different reactions. The doctors remove them from the list and add a new one. Even with all this I never get lower than 6.5 out of 10 on the pain scale.

I have such a litany of symptoms such as:
- pain
- color changes
- waxy look of the affected hand and foot
- temperature differences
- twitching of the left hand
- dropping things unexpectedly with the left hand
- falling or having my legs come out from under me
- weird sweating
- inability to sleep
- pain when someone or something including water touches the left side
- Nausea
- Itchiness
- Head aches only on the left side
- confusion
- I have broken 3 teeth now due to biting down with the pain

The pain doctors say CRPS Type 1 presenting sometimes. I have a hard time judging the temp around me anymore. I sweat on the left side when I shouldn't be, and when I am super hot and in a hot environment I may not sweat at all on the left side. In the last week I have woken up to vision changes, not a gradual thing, just woke up to things being fuzzy.

But I am increasing in pain and now I am reacting to everything from meds to face cream (the same one I have used for years). My GP thinks it is all in my head, my pain doctors say it is normal with the CRPS symptoms and my counselor says it is all because of the death of my son. I am starting to think I am nuts.

I have tried from what they say everything so far, with the exception of medical marijuana (they are starting that in the next month or so I am told) and I am currently using Fentanyl 50 micrograms (I have to wait a day in, sometimes more (which causes a great increase in the pain) between applying the 3 day patches as I have been breaking out and reacting in other ways to those as well, I am and have been using several things to manage my pain:
- Mindfullness
- Linament (especially after a shower or bath when the pores are open)
- Exercise
- Distraction
- Relaxation and breathing
- Heat
- Percocets, NSaids, Robax
- Hot water
- Qi Gong

However, I now have to take antihistamines in order to be able to take the Percocets, NSaids and Robax and I cannot use liniment or Tiger Balm or any patches (hot/Cold, liniment, etc) as well cold makes things much worse.

Does anyone else have an increase in intolerances/allergies to normal things as the pain level increases?

Also, any advice would be greatly appreciated - I am at my wits end - I still don't have a diagnosis - they just keep saying it is CRPS Type 1 presenting at this time, due to this or that - usually I am pushing too hard they say, or the tests the insurance company has put me through has spiked a pain increase, and that has caused this. When I ask if that is what this unending pain is they say "well we aren't sure yet - it takes a long time to get a diagnosis".

Has anyone found any lifestyle, diet or anything that has helped?

Thank you in advance - I appreciate any help

First off...just want to say that I am so terribly sorry for what you are going through. CRPS really throws the whole body out of whack in so many ways and add to that side effects from the meds and you can end up being in really bad shape. When my CRPS was at its worst...I was confined to a wheel chair (couldn't walk or stand at all), had dizziness, blurry vision, was vomiting all the time, couldn't think straight, had hallucinations (med side effects), and the pain was just unbearable...I don't even know how I made it through that period of my life. I too thought maybe I was just going crazy...but I wasn't. It was all real...the stuff you are going through is all real. So I'll go through the things that helped me get through my bad time and eventually gave me back my life.

In my situation...I ended up getting off of all meds at one point. They had actually cause seratonin syndrome and that was adding so many symptoms to my list and making me worse. So I got off everything and then we added in one thing at a time, focusing on the things that were making me the worst and preventing me from FUNCTIONING. I know that I wasn't improving when we were just focused on the PAIN...for me the meds barely helped with the pain and were causing so many other problems that in the end I was worse off. So when we started focusing on the FUNCTION...that's when I started to finally improve. That doesn't mean we ignored the pain...but it was no longer the focus of my treatment plan...instead we focused on my lack of sleep, dizziness/blurry vision, extreme sensitivity to touch, and walking.

First up...sleep. From experience...if you cannot sleep...you cannot cope with this much pain. Getting more sleep and better sleep (consecutive where you're not constantly waking up) makes a HUGE difference for me in how I am able to handle the pain. So once I was off of everything for about a month...I was put on amitriptyline. This gave me 3 hours of consecutive sleep a night. Not a huge amount...but prior to that I was in such bad shape that I was lucky to get 15 minutes together for a total of 3 hours all day long...it was so bad. Several months later I was able to get off the amitriptyline after doing tDCS treatments (a non-invasive therapy I did at home on my own). With the tDCS treatments I was able to get 8 consecutive hours of sleep a night...which continued even after I reduced the treatments from daily to twice a week, to twice a month, to once a month, eventually to one treatment every two months. Sleep was key to being able to do everything else.

Next up...dizziness/blurry vision. This one was actually one of the easiest to take care of...and this was another medication. I actually brought in print outs from a website about this one and my doctor agreed to try it after several other things didn't work. I was put on Clonidine patches. These are really tiny patches...not like the bigger Lidoderm patches which are cold to put on. They help regulate the blood pressure...which is one of the thing the sympathetic nervous system controls...and it is the sympathetic nervous system that is out of whack with CRPS. So even though I never had problems with my blood pressure at the doctor's office...these spells of dizziness and blurry vision were being caused by sudden drops and spikes in my blood pressure. So the clonidine patches helped with this. One word of warning...avoid extreme heat (like being outside on a really hot, sunny day for hours)...and the heat can release more medications...which can in turn cause...you guessed it...dizziness and blurry vision. Sort periods of heat like a hot/warm bath are ok...but when I was outside in the garden for hours on a hot day I found out the hard way about avoiding that sort of heat with the clonidine patches. I eventually came off of these too when I got pregnant a couple of years later and have never been back on them. Everything has sort of normalized...so while I now get the occasional episode of dizziness and blurry vision...they are much more rare and only during bad flare ups.

Now...extreme sensitivity. I couldn't wear normal clothes and I didn't feel like myself. I couldn't do so many things because of this sensitivity. So...I underwent desensitization therapy. Oh...my...god...this was SO PAINFUL. But...it worked. I still have sensitivity...but now instead of the REALLY bad flare up type pain and burning like a blow torch was on my skin at the touch of my clothes...I feel like I have a slight sun burn where my clothes touch me. Other things like cold air, someone bumping me or holding me, strong air movements, etc still cause the BAD blow torch pain...but the desensitization therapy really helped normalize the sensations and made a big impact on that front. I have also gotten better at preventing worse pains by covering up more. I look like a dork sometimes...especially in summer...but when I go out or to work I wear a scarf (to prevent cool air from touching my neck) and gloves (to protect my hands from anything cold like metal doorknobs or even when I get stuff out of the freezer). I always wear long pants and long sleeves when I go out to protect those areas. Yes...the clothes hurt (that light sunburn feeling)...but other stuff is worse so I go with the lesser of two evils. I also use a walker when I go out (which keeps people away from me so they don't bump into me as well as helps with the pain in my leg by keeping less weight on it, allows me to "carry things" by placing them in the underseat basket, and gives me a place to sit wherever I am if needed). Lidoderm patches also helped me...though I had the same issues with the cold touch of them at first but I would put a heat patch over the top of them most times (you're not supposed to because it released more meds...but I did what I needed to do) and that combo helped me in areas where I had the hardest time with sensitivity and pain.

Walking...hard to take back my life without this. So...there were several things affecting me with the walking. The first was pain, also dizziness, and finally...horrible balance problems. I did a lot of physical therapy...but it was in home physical therapy where they came to my house. This was so much better for me than the out patient physical therapy and I had a GREAT physical therapist who understood I needed to go slow and steady. It took about 6 months to get me back on my feet and walking pretty well with the walker. She's the one who recommended the rollator that I use now (4 wheeled walker). We started out with very simple stretching and moving exercises that didn't require me to stand or be on my feet and gradually worked up to standing and then walking. She also partnered with my doctor to get me a TENS unit...and THAT was a big help for pain...helped more than any meds ever did. It's not as helpful anymore because the pain is more generalized now...but I still use it for flare ups when the pain is in a specific spot that I can surround with the electrodes of the TENS unit.

So those are the things that I did with the doctor's help.

On my own...I tried the 4 F's diet...and that has helped with the inflammation and with the pain (slightly). I know it helps with the pain because when I cheat for a full day (not a little thing like have one can of pop...but just ignore it all day long)...my pain increases. So it does help...but it may take time to see the results.

The single biggest thing I have done on my own is alter the way I do things so that they are not increasing my pain as much. Reorganize the cabinets so the things you need are easier to get to. Minimize the number of steps it takes to get something (it is annoying sometimes to have stacks of things on the tables or next to me on the couch...but fewer steps or trips to another room are important)...I even keep some clothes downstairs in a drawer in case I don't feel up to going up the stairs one day. I changed the way I hold certain things, make sure to do flexing exercises with my hands to avoid the clawing up, I draw the alphabet with my foot when sitting still to avoid immobilization which increases the pain, etc. Small things that I now do without thinking...but it took a long time to get it all together in a way that has made my life easier.

I've learned my triggers and how to avoid them/minimize them. This is HUGE...took over a year to really get the hang of this and I am still learning and adjusting. Know what your limits are and push up to them...but don't exceed them. If you think you might exceed them or do something that will cause a flare...plan ahead and be wearing a heat patch or TENS unit even if you're not flaring yet to avoid the bigger flare later.

QUELL pain unit...I just got one in December and it does help a little...especially with the more generalized pain and I can wear it in the one spot that doesn't hurt...my right leg...and it helps with the whole body pain. It's about $250 and then when you use up the electrodes it comes with you have to buy more...but you don't need an Rx. I got mine off Amazon. This is no miracle treatment for me...nothing has been...but every little bit helps.

Ear buds and calming music. I get flare ups from certain noises, have trouble concentrating, and when I'm in a flare up I have a hard time calming down and laying still to let it pass. Ear buds are a savior for me with these issues. I don't know why it's different from listening to music on a speaker...but it is. I have an instrumental playlist on my iPod with songs from my favorite movies and tv shows and it really helps get me out of a flare or when there are noises that are triggering my pain flare ups.

Warm baths with Epsom salts at least once a day...sometimes twice. This just helps over all of my body to bring pain levels down like nothing else does. No other treatment really (quickly) helps all over.

Ultrasound heat therapy. I got a small unit off Amazon and I use this after warm baths in the worst areas. It's deep heat and it seems like the pain reduction from this lasts longer. After I do this treatment...if the pain is really bad...I will put a heat patch over the top of it.

Speaking of heat patches...we go through a lot of the generic ones that are like Thermacare. The neck ones are the ones I like the best because they are easy to use anywhere on my body. If using in an area with increased sweating I put a fabric brace of the first aid tape that sticks to itself to keep the patch in place.

Using all of these things helped me a lot and I was able to go back to work full time 9+ hours a day of walking, 50-60 hours a week total. I was able to take back my life, go on vacations (Disney World!!) and then have a baby. I still have a basline pain level of about 6 that usually gets up to a 7 or 8 by the end of the day. Flare ups were less often and didn't last as long as they used to. Many of the worst symptoms besides the pain don't show up except in flare ups (coldness, swelling, color changes, etc).

It was a lot of work and continues to be a lot of work...a daily battle that takes a lot of energy...but I get through it. I'm currently dealing with some issues that are making it harder after I fell off a ladder last October...but we're working on getting me to the point where I can use the walker again, take the warm baths with Epsom salts, and do all the things I mentioned to get me back to where I was before when all of these things worked together to give me back my life.

So...here's a list of all the things I described that help:

-Amitriptyline
-tDCS treatments
-Clonidine Patches
-Heat Patches
-Ultrasound Heat Therapy
-TENS unit
-Walker (4 wheeled rollator)
-Earbuds and Instrumental playlist
-Avoiding triggers
-Alter things to make life easier
-Physical therapy (in home)
-Warm baths with Epsom salts
-Four F's Diet

I hope some of that can help you. I learned about many of those things here from other members and I figure if even one can help you then it is worth the effort of typing all of this for the last hour. I know it's hard to accept the pain as part of your life...but in accepting it and then altering my life to work around it...I was able to overcome so much and be happy again.

I know that coming off of meds doesn't help everyone...so I don't want you to think I'm advocating that for you...only you know what is best for your situation. It was just part of MY journey so that's why I mentioned it.

Also...there are other treatments that some find helpful like sympathetic blocks, lidocaine infusions, ketamine treatments, and SCS. None of those were good choices for me. My CRPS spread to most of my body after a Lumbar Sympathetic block and after that I will not do any invasive procedures again if I can avoid them...so all the others are out for me. But many people do find relief with those treatments. Also...LDN is another option to look in to.

I really hope that you get some relief soon and that your doctors can all get on the same page. Getting the right doctor is so important. Any doctor who is not taking you seriously...you need to leave. That's not to say that you should leave any doctor who doesn't tell you what you want to hear...but if they aren't taking you seriously or they don't seem well informed about this condition then you probably need to find another doctor. I became very educated from the internet about this condition and having had it for 7 years now I know my own body and what I am experiencing better than anyone else.

Take care, keep us updated on how you are doing, and feel free to ask as many questions as you want. We're here to help.

Thank you for your response, I will try some of the things you listed - I am open to anything. It is empowering to know I am not alone - there are others going through this.

I have tried removing the Fentanyl for over a month before as I was trying anything and everything I could - I have tried accupuncture (made things much worse - the burning pain went through the roof for almost a week after each treatment), raindrop treatments and Qi Gong. I have a TENS unit and I use it when things get to the point that I cannot handle the pain anymore as it makes the burning pain unbearable but decreases the throbbing and dull pain significantly. The modified Qi Gong has helped more than anything though.

i have no choice but to return to work this month and I have been trying everything to get things under control but the insurance company has done tests which made everything so much worse. I just start to get things under control to a 7 and then something else comes up with them and the pain is unbearable again. I am pushing everyday to keep moving and I try to walk as much as I can but it is so hard. One doctor tells me to push through the pain and the other says pace yourself. I will follow what you have tried to hopefully get things under control - it is so wonderful to hear that I can get my life back and get to a new normal.

I so appreciate your help and I will keep sharing and reading on here. It is an amazing thing to read about some of the things others are doing that helps and having the ability to read about some of the things that I am going through and knowing that it isn't in my head.

Thank you

JanLynn,

Your open mind and warrior's spirit will serve you well through this incredibly difficult and uncertain time. Here's to pain level 6.5!

PS I found Catra's post as inspirational as you did

For sure pacing yourself is better than pushing through the pain. Desensitizing seems to be key, I'm about to embark on PT to work on that myself very soon. So if you can find a qualified therapist who can help you with that, that would be very good.

Meds can be very helpful, or not. And if they are not helping you then don't take them! Sleep is very important to being able to function. We have to change the way we think about things. I still have to work on this. I don't HAVE to stand up to make a sandwich. I can sit at a table to do that.

CRPS affects your energy level, your thinking, your circulatory system, etc. And many different things can cause a pain response. Noise. If my kids get too noisy... up goes my pain level. Stress for sure will increase your pain, so work on relaxation exercises. Deep breaths every half hour. Watch yourself for tension in your shoulders and back, and release it.

What calms you? For me I can distract myself with a book and that will take my mind off the pain.

AS far as medical treatments, there are many. Nerve blocks CAN be very helpful, especially in the early stages. And the more you get things under control now, the better in the long run. I had one nerve block so far and it worked great! It only worked a short time, which was disappointing, but I'm hoping to try again with a different medication in there for longer symptom relief. (If worker's comp will approve it). It seems every doc has their preferred methods. I like to do a LOT of research myself as well so that I can have a very informed conversation with my doctor.

There are non-typical pain meds that can help as well. Gabapentin. Cymbalta. Other anti-depressants. All can have good effect on the pain.

Good luck!

I do lots of things to relax...basically whatever I can tolerate lol. I have taken reactions to Cymbalta and Gabapentin, as well as several anti depressants. I have been like this for 2 and a half years, I am still fighting my way through and some times are better than others but the pain doesn't decrease much. It has been difficult to get people to understand that this isn't in my head, I even thought it was at one point. Before I found this forum I had never spoken to anyone who knew about this and I feel so much appreciation for the advice and I will try everything everyone has done, I hope to get some more assistance with the pain.

Thank you :-)

Thank you visioniosiv