So frusterated... pain is just getting worse
 

I just need to whine a little in a safe place, and maybe someone may have some feedback or suggestion (or feel like adding a bit 'whine themselves). I've had RSD (now renamed CRPS, which drives me nuts, as "newbie" nurses & docs give me that "I have no idea what RSD is" look until I remember to try and spit out the updated name. For those of us who live with brain fog, that is a LOT to ask!!!) I've been around the block with this lovely condition, being bedridden for several years, finally going through the "chronic pain program" who put me on Oramorph (after years of other meds that made me horribly sick to my tummy), then about 4 years after going ON the meds my RSD spread and I started the nerve blocks, and the docs insisted that I HAD to go off of pain medication, and "learn to live with the pain" if I wanted to continue to receive treatment of the pain blocks (I'd cut the meds DOWN with the blocks, but the pain was on a upwards swing). Needless to say, I became VERY depressed and frustrated, as many here have been to the pain level of a chronic 10 and being told that you need to just get more active, and stop the pain meds really ticked me off. Anyway, I told them to keep their @&*#^ pain blocks, and kept on the pain meds, living in misery.

WAIT! It gets worse!!! I developed Meniere's disease, am inner-ear condition that causes horrid, indescribable bouts of vertigo, where you spend hours to days laying on the floor next to the toilet, vomiting from unbearable nausea. This went on undiagnosed for FOUR years. Anyway, eventually, I was diagnosed, and I made the decision to go COLD TURKEY from the Oramorph, and warned the family then spent a couple of miserable weeks in my room (after RSD and the Meniere's, I was ready for dealing with bit of drug withdrawal). It wasn't fun, but I got through it, and started to use the "mind over body" tuning out the pain signals.

I actually got pretty good at it, and was able to push pain signals out of my mind, (with the help of Lyrica). I have NEVER been pain free, but I was doing pretty good. I even started walking up to 3-3 1/2 miles 3-5 days per week, and lost 75 pounds (down to a size 16 from a 24).

This past summer, the pain started screaming louder and louder, and I'm not sure what to do. I did start back with the spinal block, and the first one helped, but the second one only lasted 1 day. I often don't even realize that I'm in pain until I notice that I've become extremely irritable, and I've been dealing with "mystery" insomnia that I finally realized is that my pain level is so bad that I'm tossing and turning, kicking moaning, (and awake). I realize most people would have noticed their pain creeping up, but I was given a nasty lecture from the Kaiser Chronic Pain group "what else do you want us to do? You're on meds, and there is nothing else available to help" so I learned that tuning pain out was the ONLY way to survive and stay sane.

I've been mostly bedridden for a few months now. The nausea alone from the pain is tough. A few weeks ago, I pulled out an old bottle of Oramorph, only to find that it isn't helping, and I'm now dealing with the chronic pain AND med side effects. I also have degenerative arthritis in the knee, and I'm wondering if the deep aching/throbbing horrid pain when I stand on my leg are the RSD, or the arthritis.

Thanks for anyone who is listening, and any advice/suggestions would be greatly appreciated.

Ouch.

I know this isn't much help even if it works but you might try cod liver oil for the arthritis.

Best wishes.

Hi Wellovedmom
 

I too have been awake since two this morning due to the pain. It sounds like you have been through alot and are still going. I have been through alot of what you have, I have the postraumatic arthritis, both knees, both feet, causalgia in right leg and celiac disease. I feel your pain. I also had a two year remission, like you I still had pain, but nothing like the causalgia pain. Then it came back ten folds, I also turned to mindful distraction tasks and they are helpful......meaning helpful.

I think what we are all looking for is a balance, a stable balance that we can live with. It is just this pain is like a rollercoaster, and it is hard to keep our balance when we are being thrown for a loop by our own bodies. You are doing all of the right things, walking, self hypnosis and you even walked off 75 pounds while dealing with RSD. That is wonderful!

I have found a recipe, and it sounds like you have too that works to the best of its ability when dealing with this type of pain. To me, the arthritis pain and causalgia are totally two different pains, but when you have them combined together, they are mentally and physically destructive.

Maybe you could talk to your pain doctor, about medications. Tell him all of the things that you do complimentary to this disease. I fought medictions for years, but I just could not function any longer. So now, I do meditation, TENS Unit, salt baths, exercise when pain is low, self hypnosis, mind over body techniques and medication. If you are in a flare from the RSD, you need to get your pain under control so you can reason with the supplements that you use. I also use herbal supplements, Omega, flaxseed, hemphearts, Vitamin B,C,D and a few homeopathic stress reducers. Even with all of this, I still had a terrible flare a few weeks ago and just had to ride it out. I am sorry for your pain and I do hope you find a combination that works for you. Try to get the pain under control first and then I am sure you will sleep a bit better also. I will keep you in my thoughts and prayers.

God Bless, Jeanie

Thank you
 

You just made my week regarding the comment about RSD/CRPS. Doctor's say that to me all the time. I could care less what it is called...just help me!

I am only 2 years into this nasty disease so don't have a lot to offer. Can you try a tricyclic antidepressent for sleep? That might help the insomnia.

Congratulations on the 75 lbs. I too have lost a lot of weight. I was pretty small to begin with but with all this medication I'm now shopping in the jr. section. Yikes!

Good luck. You sound like a very strong individual and you WILL get through this. Keep your chin up!

Hi,
 

My nurse mentioned Vitamin E to me and I have since read up on it and it says it can help with the arthritis. It has a lot of good benefits so you might want to try it.

You might ask your Dr. for Lidocaine patches also. A lot of us on here use them and they do help a lot.

Have you tried PT. Make sure you have a PTist that knows about RSD. If they do they won't make you lift weights and do therabands. They will do a lot of massages and myofascial release. We tend to tighten up from the pain that we are in. We tend to get in a protective mode so no one will touch us and we tighten up.

When the ones like you come on here that are in such a bad way it reminds me of how I was for so many years. My heart goes out to you.

Others will have some good ideals. I remember going back to my Dr. with ideals I got off of here. You finally find the things that help.

The pain doesn't go away completely but we can get it under some contorl with the right meds, PT, ketamine, Pain pump, SCS's and anything else they finally come up with.

I hope you find what relieves you pain soon.

Ada

I'm so sorry. You've been sick for a really long time.

There is a list of ketamine docs that Jim Broatch of the RSDSA provides - I just got the latest one from him a week or so ago. I'd be happy to share it with you. The ketamine docs have ketamine, of course, but they also deal with RSDers all the time - they can help you A LOT with your diagnosis, your meds, PT, and in so many other ways.

If you aren't a candidate for ketamine, have you considered a pain pump?

Sounds like you deserve to try to get rid of your pain. The best of luck to you.

XOXOX Sandy

Hi I am sorry you are in such a bad place. I think it is time to find a new doctor with a different approach. What kind of doctors are you seeing now? I am assuming since you have had this for a long time other conditions on top of rsd have been ruled out? Sometimes like how you have meniers on top of rsd other conditions may get missed when dx with rsd. Since the pain program worked to get you mobile again have you thought of doing it again? I went to one in Cleveland and my pain at the time was too high but you sound like previously it helped you. What about other medications? Other more invasive treatments? I understand how frustrating it is when the docs throw there hands up but I encourage you to find another one. It just takes 1 doc with a different approach to get you back on your feet.

Hi Sandy

Sorry for just popping up a question, but when are you a candidate for Ketamine?. Just wondering if its a possibility that i have to think of and search in..?

Gitte - Olivers mom

Hi Gitte,

I know you don't live in the US, but my daughter is 16 and has gone through two rounds of Ketamine Infusions. You will need to see a doctor that will approve Oliver for the infusions. You really need to exhaust all other treatments. My daughter went through a childrens Pain Rehab program and then she went through four sympathetic nerve blocks. Then back through the three week pain program again. She was doing well after the pain program and had a fall...we then went to see Dr. Kirkpatrick at the RSD/CRPS Institute in Tampa Florida. Because we exhausted all other treatment for her and she passed all of the tests, cardiology and other tests, she was a candidate.

I know Oliver is very young, before you look into the Ketamine for him, PLEASE try a pain rehabilitation program. See if you have any programs where you live. You can pm me if you have any other questions about the program.

I am sorry your son has to go through this so young, I know how difficult it is watching your child in so much pain. My Lindsay has been dealing with this for 6 years. She has good days and not so good days, but the good days we relish. My prayers are with you and Oliver.

:hug:Sandy

Hi WellLovedMom,
You have reason to share your pain. We understand and are here for you. I was just thinking maybe the Oramorph was 'out of date' Some meds loose their strength when they are 'out of date' Just thought you might check the bottle.
I've had RSD for 15 years, along with fibro. Trigeminal Neuralgia & PTSD
Besides full body for the last 6 years, it is internal and now I'm in the process of having sleep apnea checked out. I, personally, find so much comfort and kindess here on Neurotalk. Please stay with us and we will do our best to support you. There are so many knowledgable friend here, and they are so willing to share their knowledge with us.
I used to be involved in sports, so I enjoy watching the major tennis matches, the olympics, both summer and winter. I've never ice skated, but that is my favorite. My daughter and I used to play tennis about 5 days a week and enjoyed going to some tournaments, so watching brings back some good memories. I always feel good watching sports rather than sorry for my condition of RSD. I do feel bad about my weight gain so it motivates me to keep and reach my goal.
Music is also something that lifts me up. When I get out of the house, its
such a good feeling. I do have a window of time in the afternoon that I'm able to drive. My Dr. gave me the number of hours I need to wait after taking certain meds.
I also have a home based business of marketing dark healthy chocolate-with a cold pressed patent. I enjoy that with no pressure of appointments etc. I have a laptop and printer by my bed.
Scented candles and natural essence oils I enjoy. A friend bought me a machine that dispenses natural oils in the air. Lavender is my favorite- a calming effect. Another friend bought me a wax machine to brush on my hands and feet. It's theraputic and easy to use.
Epsom Salt Bathes are something many on here enjoy. I enjoy reading, and have done a lot of personal growth work. After my parents died, i did over 2 years of counseling, which has helped me when I got RSD following surgery. The last 6 years I've been seeing a psychiatrist once a month. He is also a neurologist familiar with RSD and a pharmacologist. A few months ago he put me on a 200 person trial study for a med for fibro that also had a side effect of a sleeping pill. I was having a terrible time at night sleeping, but am now sleeping 10 hours at night. The restorative sleep has lessened my pain. Was able to go down on pain meds.
I've been in a rollercoaster of up and down pain. It seems like we are going to have that with weather changes and personal stresses. It sounds like you have had this for a long time. May I ask how you got RSD? Like I mentioned, mine followed surgery with a frozen shoulder, but didn't get diagnosed for 4 years. Our only child, a daughter, was 15 at the time. I did have 2 remissions--of course I didn't know they were remissions-I just thought all the pt and massage therapy fixed my shoulder. It took 100 of each. And then the therapist told me it might go to the other shoulder. And after a year of good health, it did move to the other shoulder.
Hope something we all have said can be of some physical and emotional comfort!!!!! One of your new friends, loretta with big soft hugs :grouphug:

Hello WelllovedMom...

I too send you my hope and new friendship...If I had some pixy dust and a pretty wand..I would be swining and tossing that crud everywhere for my friends here and myself..Our lives are so inter twind thru our RSD... It is special in that we all can relate to eachother thru our pain and experiences..I don't have a magic answer, my RSD started in my rt. knee..almost 3 yrs. now...but I do know we ahve the support and concern of eachother..we help and encourage eachother from here to the moon and back...I can say the one very beautiful thing I have aquired due to my RSD illness..is having the opportunity to meet such wonderful, now friends here on our RSD forum.. I welcome you..and know that we care about you deeply!!

Hugz, (gentle ones)- Kathy

Thank you all so much for your kind words, ideas, and support!

Loretta & Keep Smilin, you both seem to especially have similar pain issues & complexity of situation. I initially injured my right knee back in 1983 (hyper-extended it in a snow accident) and then finally Kaiser did orthoscopic surgery in 1985, but immediately afterward, I had nerve damage with the loss of feeling/pins & needles/daggers, burning, and such. The doc told me that "oops, sometimes when we pop the leg out during surgery, we can over stretch the nerve. Sorry. You'll learn to live with it. It will take some years, but you'll learn to tune the discomfort out of your mind." The worst part was that the surgery wasn't successful, as there was so much damage, and they had to go BACK and re-operate the following spring of 1986.

As I have a somewhat lengthy history, I try to keep postings brief (never managing to), but a bit more info/history: I have been through a seven page spreadsheet of meds (pain meds, anti-depressants, & such). I started the spreadsheet, as I am sensitive to meds and if it has a side effect, I'll most likely experience it. Not world stopping, I just have to weigh the benefit/yucky side effects and see if it is worth it.

I was fortunate enough to have one of the early TENS back in the late '80s (my very first pain therapy), and have sense tried bio-feedback (still a fan, it does work... well at least it helps), acupuncture, acupressure (I have a Pointer Plus device, which sometimes helps), never was offered PT through Kaiser (had to pay for my own acupuncture too). We have a hot-tub, which can be helpful, but getting in and out is a bit tricky.

OH! Did I forget to mention that I also am blessed with migraines? I’ve had them since I was around 5 years old, and have worked up to getting Botox shots to help with the muscle spasms in my upper neck and across my head that trigger migraines. I'm game for whatever may work. I just don't want to go back to being a zoned-out zombie, who is searching for words (some meds had that lovely side effect of word soup-where your words come out in the wrong order, and you can't think of the correct word.) I even had a family member think that I had gotten heavily into the wine one holiday, which was REALLY embarrassing. I don't mix meds and alcohol, and no one in my extended family ever really understood what RSD was, and why the heck I'm on disability. I LOOK normal. (I use this now when I get snippy with strangers shopping or something of the sort and I start to make a judgment. I'm pretty quick to remind myself that maybe they have some horrible event they have to get to quickly, or their life is even more challenging than mine.)

I’ve also had surgery on my right shoulder for “impingement” but I’m worse now than before the surgery. I think that it’s just that RSDers shouldn’t have their bodies messed with, we risk setting off new flairs, which I wasn’t aware of when I had the shoulder done.

As for my doctors, unfortunately (and fortunately), I have Kaiser medical- an HMO, and am on Medicare (at the ripe old age of 42). My co-pays are outrageous ($150 per spinal block, $50 for Botox). It may not sound like much, but I really need to go back more frequently, but can’t afford it, so the treatments are not terribly effective, as I’m not really able to get them often enough to avoid the rebound/flairs.

Loretta, I have to ask you about Fibro. Both my primary doc and neurologist have said they think that I may also have Fibro, but that there isn’t any test for it (they have done MRIs and ruled out MS, and blood tests and ruled out Lyme disease, along with thyroid issues). My primary doc says there is no way of knowing for sure, and that the only treatment is meds and “know your limits” which I somewhat do, and take meds (I’m on Lyrica for nerve pain). It drives me CRAZY, as I want to know if this is something that has developed (I do have the pain points bi-laterally, and get SO exhausted that there is no way to describe the horrible unbearable exhaustion.) I asked for a referral to a specialist to re-examine me and see if this is now something I am dealing with, but my doc says there isn’t anyone to send me to and it wouldn’t matter anyway. I would be happy to better understand what is going on with my body. That is how I have stayed sane, and delt with everything so far is learning and working with each hit as they have come.
Any ideas as to who could diagnose fibro? (What type of specialist?)

I too find joy in music. I joined our church choir, and make jewelry (was starting to get ready to try to sell some but had to put it on hold for a bit, but no matter, I can still create when I’m feeling up to it.) I had worked with the Chronic Pain program at Kaiser, which was wonderful the first time (they reviewed all my medical history, meds, then worked with me to tailor meds to my needs. My arthritis was so bad that they felt PT would only make me worse, so they skipped that. The dumb thing is they kick you out of their program after 2 years, so even though this is a lifelong issue that occasionally needs fine-tuning, I have nowhere to go. I did re-enter the program several years ago, as I was desperate, but they were… MEAN!!! (I feel silly saying this but I just have to!) They actually asked me what I wanted them to do for me, since I’d already done the program, and then pointed out that they had nothing else to offer me. I left feeling stupid, and like a waste of everyone’s time (I mean in the BAD way, like a waste of space) and vowed never to put myself in that position again. Of course it cuts off the ONLY RSD treatment Kaiser has to offer, other than my 10 year old program, but I will not subject myself to self-righteous cruel idiots again.

Ugh! That was ugly. Sorry about that. All better now. Anyway, I truly appreciate EVERYONE who was kind enough to respond, I do go back and reevaluate if there are some ideas that maybe I should be trying that I’m missing. Right now I’d have to say that anything that would help with sleep would be good (wasn’t able to last night) and that I want to feel well enough to walk.

Anyone here with knee issues try Yoga? I keep hearing “you should try it” and I keep cringing inside every time as I think of the arthritis pain, and the possible RSD flair. Any feedback again, greatly appreciated. Thanks all, and sorry I ended up rambling on so much.