CRPS (RSD)

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I have been suffering from CRPS in both feet for about 2 1/2 years. I have took many different medicines to try & relieve the pain. Currently im being prescribed; 2400mg Gabapentin, 240mg Dihydracodine, 400mg Tramadol (sr), Paracetamol, 20mg Oxynorm (Oxycodone). All are the maximum dose i take in 1 day. In July 2006 i went to the Pain Clinic at City Hospital Birmingham to have a Guanethidine Block. This block gave me about 80% pain relief for about 5 weeks. I am currently undergoing a series of 5 of these blocks (1 per week) to my right foot. I had my 3rd one today. It is a painful procedure to say the least. Today the pain clinic increased the Guanethidine, this caused a very bad burning sensation whilst the tourniquet was around my lower knee. I am hoping that the series of blocks give me alot of relief. I have been out of work for 2 years due to the severe unpredictable pain. I would like to chat with any others that suffer from CRPS (RSD). If you fancy a chat then you are welcome to email me on ****

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Richie.

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  • Posted

    I have had CRPS for about 3 years. I am going to a trial CRPS program to take infusions of ketamine. I really hope this works to at least get rid of some pain. My right ankle and foot is swollen up at least double, anyone else have that problem?
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    • Posted

      Hello.

      I am new to this forum.

      My foot used to be swollen all the time. I couldn't wear a shoe. I had to wear a surgical shoe with a Velcro strap.

      I have found that antihistamines helped my pain and the swelling. I took Benadryl and now take Hydroxyzine HCL, a prescription antihistamine.

      I was accepted for a Neridronate trial but then I couldn't participate because it was for Type 1 and I have Type 2.

      Best wishes with the Ketamine infusions. I hope they reduce your pain and suffering.

      Take care.

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  • Posted

    Hello.

    I am new to this forum.

    I developed CRPS after an All Terrain Vehicle accident in June 2015. It crushed my right foot. I now have CRPS in my right foot and somewhat in that leg too.

    I take Gabapentin, Pristiq & Hydroxyzine HCL 25 mg ( I cut the Hydroxyzine in half and take that half at bedtime). Hydroxyzine is a prescription antihistamine. It was prescribed for me for sleep and anxiety.

    I used to take Benadryl.

    I was on crutches for a year and a month. During the year I was in crutches I didn't take any antihistamines. But for some reason I started taking Benadryl again and my pain lessened and I started walking again. I have been waiting again for a year and my pain is so much better.

    The Hydroxyzine is helping with the pain as well.

    I tried cutting it back to a quarter of s pill last night and I am experiencing more pain today. So... I will be going back to a half tonight.

    I'm sorry that you have CRPS. It is a HORRIBLE disease.

    Neridronate "cures" people with CRPS but it has side effects.

    I was accepted for a Neridronate trial but then I couldn't take part because I have Type 2 and the trial was only for Type 1.

    I pray that one day they will understand this disorder and find a way to cure it and actually prevent it that doesn't have bad side effects.

    I hope you are doing well. Take care.

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  • Posted

    I had 10 ketamine infusions which helped me.  I'm in remission at the moment and pray that you will get relief soon.

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  • Posted

    I have had CRPS for a little over two years now.  Well I guess technically three, but it took months for a diagnosis.  I broke my foot and disconnected a tendon in a fall at work.  Once my doctor knew what I was dealing with he sent me to a pain clinic as the pain in my foot and ankle was unbearable.   Started out n hydrocodone 325mg and gabapentin.  Took less than a month for nothing to get better and my hair to start falling out due to the gabapentin.   The doctor discontinued the gabapentin and we moved to sympathetic lumbar nerve blocks.  I found relief after each one and by the third I was amazingly happy.  I still had minor pain and flairs, but I was considered well treated.  That lasted about 6 months and my crps started to flair more frequently.  This time I have pain that affects my foot, leg, lower back, and right arm. My doctor put me back on hydrocodone which helps dull the edge but it is in no way a therapy or something that will help long term.  End of June I had to stop going to work again due to the pain.  I have had 2 more sympathetic lumbar nerve blocks.  First one gave me some relief for about 4 days and the second gave me none at all.  In fact, I got worse instantly after the injection.  That time it had been so much more painful than any injection before it.  Doctor as of now has decided to not try another injection and instead decided to prescribe nortriptyline starting at 25mg and having me work my way to 150mg.  Just on the 25mg I started having unpleasant and scary side affects.  Sweats, muscle tremors, confusion, emotional mute at times, and most scary I see flashed out of the corner of my eyes and see a figure at times that is not there.  Scared me to tears the first time as I thought someone had broken into my home.  Nurses never contacted me after leaving a message about my concerns and being so desperate to relieve the pain and get back to my life I continued.  Moved up to 50mg at the end of the first week and within 15 minutes I would be incredibly sick.  I was finally contacted this week and advised to stop taking the nortriptyline and have a new appointment scheduled.  My last visit I was told that they only had two more options available to me.  nortriptyline was one and the other is some other medication they did not advise me of as it is a last measure drug.

      The pain clinic is working on 'long term' resolutions.  They refused to help to try and manage the current pain short of advising me to go to physical therapy.  I am happy to do everything, but basic PT kills me.  My orthopedic does not understand this and sent me to get a second opinion.  The second opinion was a walking disaster as she decided some PT would cure me as long as I started being more active.  The swelling I had on that day and purplish blotches all over my foot and leg were nothing to worry about and no concern involving crps.  Obviously, she knows nothing about crps.

      I would love advised, suggestions, or anything.  I am going to see a therapist cause I am having break downs on an almost daily basis.  Considering I am on depression medication and anxiety medicine since before this happened and still take them in their max doses I know a lot of what I am feeling is straight up fear.

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    • Posted

      Hello.

      It is almost one in the morning here and I'm about to head to bed, but I wanted to let you know that you are not alone.

      I will get back to you later today and give you some tips.

      Hang in there.

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    • Posted

      Hello.

      Sorry I didn't get back to you sooner. Had a busy day.

      I have Type 2. Do you have type 1 or 2?

      I live in Colorado. I can't remember if you are in the USA or if you live in Canada, Europe?

      I am taking Gabapentin, Pristiq & a prescription antihistamine, Hydroxyzine.

      When I was first diagnosed I was put on Gabapentin. I was already taking Pristiq because I have Fibromyalgia & it helps me with the pain & depression of Fibromyalgia.

      I was diagnosed quickly, which was surprising because I was diagnosed at the hospital in the next town & even though it is a new hospital, it is a small town. The ER Dr knew what it was as soon as he looked at my foot.

      I was in an ATV accident June 21, 2015 that crushed my right foot and hyperextended my right ankle.

      After the ER I went to an orthopedic surgeon who confirmed the diagnosis.

      I was put on Gabapentin and was given hydrocodone. The Gabapentin helped with the pain but did not get rid of it. The hydrocodone did nothing for me at all.

      The small town hospital actually has a warm salt water therapy pool. I started physical therapy there and was making progress until I was injured in the pool. One of the therapists made me do jumping jacks & the pounding on the bottom of the pool was just too much on my foot & atrophied leg. The CRPS moved up my leg to my knee.

      None of the therapists there had ever heard of CRPS. People & doctors just don't know about this disease.

      I had also started taking amedical marijuana indica edible at bedtime. It helped with the spasms & pain & put me to sleep.

      After a few months I started going to the indoor pool at the local recreational center. I went to the deep end & used a pool noodle to do the range of motion exercises that I learned in physical therapy. I eventually started swimming a few laps using one leg. No pressure, just leisurely laps. Sometimes on my back, just floating & relaxing. This helped me to get range if motion in my leg & foot & just got me physically stronger & relaxed a little more. But I discovered that the high amount of chemicals they were using was actually causing pain in my foot.

      At the time I quit going to the pool, I started taking Benadryl. My pain started to decrease. I was still taking Gabapentin ( 2700 mg a day) the Pristiq and one Indica marijuana edible at bedtime. I started to have less and less pain. I started to walk around the kitchen without my crutches. Now, I had been on crutches for a year and a month. But after starting the Benadryl, I was walking without crutches. I had a limp and walked slowly but I was walking. I still am a year later.

      I started taking a prescription antihistamine this May & I stopped using the marijuana & cut back on the Gabapentin to 1800 mg a day.

      The antihistamine really helped me.

      I eat as clean as I can. Try to avoid sugar, caffeine, alcohol, tobacco, processed foods, franchise restaurant food, chocolate, really spicy foods - these things stimulate the nervous system. Drink plenty of water, stay hydrated. I watched comedies and laughed. I read my favorite books. Petted my cat. Colored in adult coloring books, it is creative and relieves stress. I didn't put ice on it. Ice on it is a bad idea. If my foot burned hot I cooled it in front of a fan or ran it under cool water. If it burned cold I put my foot under a warm blanket. Get some sun and fresh air. I tried to change my outlook on life. I accepted that things had changed & would never be the same so I found a new normal. There was a lot of trial and error to find what worked for me. I had to teach my brain a new way of accepting and processing the pain.

      Look up bio feedback on the internet. Look up on the internet pool exercises for CRPS or exercises for CRPS. Conventional physical therapy does not work for CRPS and the pushing physical therapy even though it hurts is not good for CRPS. It will make it worse. The CRPS moving up my leg is proof of that. And if you read about CRPS physical therapy it will tell you to avoid conventional physical therapy.

      Pull up "Paula Abdul and CRPS". She did some new treatment for CRPS that is like bio feedback. It teaches your brain a new way of dealing with pain. Hard to explain. She explains it better. She had it in her neck, shoulder, arm & hand.

      I still have pain but not the 9 or 10 I used to have. It is more like a 2 or 3. Sometimes a 1 or none. Sometimes a 5. But not above a 5 in the last 7 months or so.

      I didn't do the injections. I do not

      do well with things like that.

      I developed Serotonin Toxicity this May & that is why I had to stop the medical marijuana, cut back the Gabapentin & stop the Benadryl. The prescription antihistamine helps the pain, as I said above pain is below a 5. It helps me with anxiety and sleep too. Sleep is so important with CRPS. Get sleep! Rest often, don't overdo. Pace yourself. I prayed. I read about Near Death Experiences. I have had one. It helped to read that there is something after this life is over. That others had experienced some of the things that I did.

      I have to head to bed now. If I think of anything else I'll get back to you. Stay in touch with me. I'm around this site at least once a day.

      I hope this helps. Take care.

      Your friend, Tracy.

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    • Posted

      Hello. I just left you a message that took me an hour to type on my tiny phone keyboard. Now it is waiting to be moderated. I will get back to you tomorrow by private message. So sorry about that. It is frustrating that they do that. I spent an hour!!!

      Take care. Hang in there. Your friend, Tracy

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    • Posted

      Hello.

      Please read my replies above, my replies to Colleen and my other replies recently to others in this forum. They still haven't moderated my reply to you. Probably because it is the weekend.

      Take care. Gentle hugs.

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    • Posted

      Hello,

        I am sorry it took me so long to get back to you.  I have been struggling so hard with pain lately it has completely changed my day to day habits.  I am so happy that you are feeling so much less pain than you originally did.  I have type 1 crps and I am in Milwaukee, Wisconsin.

        I have done the hydro therapy last year.  It helped a great deal by returning range of motion from surgery and easing my nerves back so I was not so touch sensitive.  It was a little pool that has a treadmill inside it so if you walk it is low impact or it can be turned off so you can do other low impact like bending, stretching, or just have some gentle jet motion.  My doctor has recommended I go back to this and I will but I honestly am not sure how it is supposed to help at this point.   I still do the range of motion exercises and low impact at home with touch sensitivity cloth/blanket approach.  It keeps massive swelling and discoloration away for the most part.  I have not lost any range of motion on my 'good' days (Pain scale an 8 for me) but when I start to flair or have bad days is when I limp/walk on the right side of my foot more because just the pressure from walking is to much for me to handle.  Doctor has advised a cane is needed for me as my leg just gives out several times a day.  Does not matter if it is a good or bad day...my leg just stops being there and I fall or catch myself none to gracefully by hitting a wall or counter.

        Went to the doctor on Monday and she said there was nothing else she could do for me.  I cried and was in panic mode for about 5 minutes.  I told her to give me a minute to control myself and than asked if we could go back and try some 'sister' medicines.  She thought about it and decided that would be okay because we had to stop both gabapentin and nortriptyline due to side affects.  Now I am going to start taking Lyrica.  She also suggested a ketamine drip, but warned insurance does not cover that and it is not likely my workmans comp will cover it.  We are also giving the lumbar sympathetic nerve block one more chance.

        As is my workmans comp is not covering anything until I see their doctor again on September 15.  The insurance company claimed 4 nerve block injections would cure me....I kid you not....the man said cure.  I literally bit my lip as not to get mad/violent/cry on them.  If only though.

        Doctor also confirmed my crps has spread to the entire right side of my body....from toes, leg, hip, back, shoulder, arm, to finger tips.  As of now, I am still waiting for the referals to go through to restart PT at the hospital and also to see a therapist as I am mentally not coping to well.   I actually feel soooo much more here now that I am off the nortriptyline but I still want to talk to someone to get some mental coping skills.  That one they said would take two months to get in and likely two weeks before they even call me.  PT is about a month booked out and also have not heard from them though it has only been 3 days since they sent to the right fax (sent the referral to the wrong place twice already).  Going to call tomorrow to check up on that at least.

        I have found that my cats and dog do help me mentally relax.  My dog especially as she crawls ontop of me when I am shaking with pain and muscle spasms.  My Baclofin helps a ton but sometimes my body just does not care.  I also do small tasks that hurt, but I push myself through it.  Dishes, sweeping, mopping, cleaning....all hurt but I do them in small intervals as I refuse to just lay down and do nothing but hurt.  I have found that I cannot do anything complex.  I have some card games that require a bit of thinking and I cannot do it because my brain goes to pain, sleep, pain...oh cards.....pain, pain.  I also do like the adult coloring books.  I can do a little bit and than close my eyes and work past my tiredness, anxiety, etc and than go right back to coloring.

        My doctor has never once mentioned an antihistamine.  I already take Walatin (Walgreens version of clariton) daily year round so maybe that is why.  I hear Benedril and I think sleep, but maybe for me that would be a blessing.  I do not sleep well.  I sleep an hour or three and than generally wake from pain.  I than have a terrible time falling back to sleep and repeat the cycle.  I also fall asleep randomly during the day for about 30 minutes to an hour depending on where I drift off.   I do sometimes get 6 or 8 hours sleep, but I honestly think that's when my body just shuts down cause it cannot take it anymore.

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    • Posted

      I just wrote a wow and thank you for all both of you have shared and hit some button and it disappeared. 

      Hurting and too tired now, hate it what that happens. May mean it wasn't meant to be?

      I'll try again later.

      Need to dip myself in a pain blend and fill my body with ginger water. Need to deflate full body swelling.

      What kind of Dr.'s do you all see?  

      Fibro, OA, CRPS, and I can't sit down.

      Thank you,

      Elaine

       

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    • Posted

      I see a pain management doctor or better yet her nurse practitioner. I feel almost cheated that I saw my doctor once last year and than never again. Even by request I am not allowed to see her directly wgich p****s me off...but at the same time I guess she has nothing more to say about crps.

      I hope your feeling better and look forward to your rply.

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    • Posted

      I've looked up and called so many places in the Tucson area without any hope of finding a Dr. in this area. I have a Family Nurse Practitioner as my only Dr. She wants me to search for a specialist then she'll send a referral. 

      I'm pretty sure if I stayed away for ice cream and sugar I wouldn't get these full body pain flares. I run to this junk to stuff my feelings I believe. 

      I will keep searching and see if there is a Dr. in Phoenix who thinks they can help me. I'm also doing all I can to not take all the pharmaceuticals I read others take. By using healthy food, water, and applying my essential oil pain blends I do okay. Not sure if pain I'm in is from both food and over doing it 3 days in a row cleaning my Church and working in the dirt pulling weeds for God. I can do practically anything when I'm at Church. Blows my mind! God is great. Essential oils are amazing, His 100% natural medicine!

      Thank you for replying.. 

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    • Posted

      Hey,

        I have heard that not eating specific foods such as caffine can help.  I am so gla that works for you, but please do not wait to try medicine if your body starts getting worse.  CRPS has a bad habit of working with treatments for awhile than just not working anymore.  God gave wisdom do our doctors to go through all those years of college so use his tools if ever you need too!   I am on the prayer chain at church and just knowing god is by my side gives me courage to push on everyday!!

        I have not found any specialists for CRPS where I live either.  I see a pain management doctor because at least they are aware that CRPS is out there and they know enough to check their medical database to see current treatments and trials.

        Good luck!  Look forward to you sharing again!!!

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