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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi Everyone!

For the newbies I haven't met, I'm Kate. Im' a 27 year old married mum with three kids aged 6, 4 and 2 years old. I've had rsd for 4 years, in my right arm from fingers to neck. I live in Australia.

Sorry I haven't been on for a while. My pain started getting crazy, my meds didn't even come close to helping and I was living on endone all day.

But at the end of November I saw a new pain doctor who said I could try the 7 day ketamine infusion. I was booked in for 17 December.

Basically I was on a continuous IV feeding in a low dose of ketamine. By the 3rd day, I had no pain at all. It was the strangest thing! I went home the day before Christmas Eve and was able to have a GREAT Christmas and New Years!

My kids and husband can touch and hold and rub my hand and arm! My eldest daughter was 2 when my rsd started, so they've all only known me to have a sore arm they can't touch, so they're so amazed that they can cuddle and touch me on my "sore" arm. I went on a steam train two days ago with open carriages and the breeze actually felt great!

I haven't had ANY pain yet, and I came home on Dec 23rd. It's just amazing to be pain free for this long, I've been making the most of it since I came home, we've done SO MANY things!

I was very lucky, the procedure was done within 3 weeks of booking in to the hospital, and it was all paid for by the health system here in Australia.

Anyway, I just wanted to let you know that the ketamine infusion is so far working for me, when I thought I was beyond getting any pain relief. I hope it can be an option for all of you too.

x Kate
Hi Everyone

I'm happy to answer your questions, I know I had heaps when I was finding out about this.

Firstly, I stayed on my meds, and still took endone on the second day coz of a big flare up. I'm still on my meds now (baclofen and endep) as if the rsd comes back I'd have to go back on them again anyway, easier to stay on them for now. But I haven't needed any extra meds since that second day.

Josh, yep I did get my rsd from a blood test where it damaged the median nerve in my right arm. That was 4 years ago now.

The doctors didn't give me any other drugs beforehand, but they started me really low, only 4mg an hour for the first 12 hours, then going up 4mg/hr every 12 hours. This protects against those symptoms, as you are slowly increased on the ketamine. If you start feeling too inebriated before you get to the max of 20mg/hr, you stay on that for longer, or go back down a level.

The ketamine, for me, not only got rid of my pain, but also I can be touched on my arm, I can bang it on something and it only hurts like my "normal" arm does, a warm breeze is ok (cold is still a bit uncomfortable), there hasn't been any swelling or colour changes since this started. I don't normally have the sweating symptoms. But basically its taken all of my symptoms away.

Today is day 22!

Hope this answers your questions! If you have any more I'm happy to answer them.

x Kate
Hi again Josh!

I had a couple of weird things happen when I came out of hospital.

On my first day home, I was lying on a mattress in the loungeroom, sleeping. At one time I was half awake, and was sure my mum was sitting on the mattress next to me, talking to my husband and kids. This went on for a while, I was listening to their conversation, but still sleepy. I woke up and asked Matt if my mum was still over. He said she hadn't been here at all. That was weird, to me it was very real.

Then the next night I went to bed on my own, earlier than my husband. At one point I woke up and saw a man in bed next to me. I was scared out of my brain, and pushed him out of the bed quickly with my feet. I thought I was still in hospital and that some weirdo patient had got into my bed. My husband didn't appreciate the wake up! lol I was so scared, my heart was racing, I was panicking. It took me a minute to look around the room and realise I wasn't in hospital, I was at home. So that was weird too.

But since then my mind has been fine.

I have to say I haven't noticed any changes with pruning on my fingers. I only have quick showers and I don't wash the dishes, so I've never noticed it being abnormal, and haven't noticed any changes like that since the infusion.

My liver function test was fine, but I had major dramas with the IV's. My veins didn't seem to like being bothered! The first IV was in for 3 days and was painful from the start, they put extra local in as the stinging wouldn't end still after about 15 minutes. By the end of the 2nd day, I had chronic pain (rsd level) in my IV arm, my good arm. Just the iv tube touching it caused me to cry, there was lots of swelling and bruising and throbbing and stinging pains didn't let up. I ended up having endone to try and take the edge of that! The next day the pain doc moved the IV, but it kept hurting like it was still there. One thing they thought was that the ketamine had gotten into my tissues and were causing problems. That IV site hurt for 2 weeks. It was on the underside of my forearm, so for that whole 2 week period I couldn't rest my arm properly. The vein is still bruised in a 2 or 3 inch line.

Then the 3rd one, in the back of my hand, caused similar problems but not as severe. I was wised up now, and got them to move it as soon as it was too distressing. I had 3 sites that were used for 2-3 days each, one they couldn't get the iv into (so that bruised up) and a blood test hole in my inner elbow.

The pain (from touch, as well as internally) lasted for 2 or 3 weeks in total, and were very distressing for me. My rsd started from a blood test and a big part of my thoughts were that the pain wouldn't go away, that the rsd had spread to my right arm from the iv's. I couldn't rest my arm in any position because of where all the bruises were, and I couldn't sleep because of this. I ended up using my rsd arm and hand to do everything, as I couldn't use my "good" hand, they swapped over! Luckily I have always worked hard to keep my strength up in my rsd hand, so once the pain was gone I had almost full use of my right (rsd) hand. It was weird to wash my hair using only my right hand, when for the last few years I'd wash my hair using only my left hand! It all resolved and both hands/arms are great now.

BUT I have to add that the friend who was having the ketamine at the same time as me had similar problems with one iv hole, but it was in the position (side of my wrist) that was the easiest for me. So everyone's different. Other people I had talked to didn't have any dramas with their IV's, so don't take my story as something that will happen to you, just be aware that it can happen. Our veins just seem to like to be left alone!

x Kate
hi kate and also josh:

kate, glad to hear the ketamine is working for you. Just to let everyone know, ketamine is not a cure for rsd. each person is different, and what works for one person may not another. but, i am glad your having great effects from the medicine. are you getting booster doses?

josh,

most doctors in the U.S., require a personel inventory test, done by a psychology dr, to rule out certain mental illness, prior to getting the iv ketamine.

take care and best of luck kate
Hi Kate,

So pleased to hear your Ketamine infusion is working.

I have a question for you & for anyone else out there in RSD land - is a Ketamine infusion likely to work on someone with RSD for the past 10 years? I was diagnosed 10 yrs ago after damaging my sub-talar (ankle) joint, but was about 6 months into the condition before a definitive diagnosis was made - and then no suitable treatment plan was ever put in place (basicaly because it was so hard to find a Dr who understood the condition well enough to do so). Due to the RSD being too aggressive now, Doctors are refusing to do an arthroscopy or any other surgical procedure to investigate the extent of the damage to the sub-talar joint (none of this was done immediately after the injury unfortunately) - so I'm desperately trying to find the right pain management program - which is proving difficult..

Any advice greatfully appreciated.

Thanks,

Elaine
Hi Elaine

My rsd was 4 years gone when I had the infusion. But I know of a man who had rsd for I think 14 years and the first infusion lasted 3 months for him. It doesn't seem to matter though how long you've had rsd, some people respond to it, some don't. My doctor said he'd given up trying to predict how well each person would respond. I thought I had a fair chance, as I have a pain gel that contains ketamine and its the only thing that gives me total pain relief everytime I use it.

Jokehakk, going into this I was just hoping it would work while the iv was still in, anything after that was a bonus. Then after the first day of the iv coming out and I was still pain free (23dec) I hoped that I would get Christmas without pain, so I could enjoy it with my kids. So to go this long, a month without pain, is just overwhelming. I know its coming back soon, I think you'd only get very depressed if you expected it to last for months and it didn't, so I'm just taking it day by day and any extra day it lasts is just a miracle.

I go back to the pain doc on Feb 3rd, I'd definately have a second go when this wears off, the subsequent infusions often give you double the pain relief time that the first does. I'll let you know how i go!

x Kate
Hello - Regarding Ketamine - I have RSD in my knee and initially my GP had the Compounding Pharmacy work up a cream of Ketamine at very low dosage and Elavil or Amitriptyline and one other substance. Anyway, worked like a charm - used every 5 or 6 hours. Unfortunately, I used it too frequently to keep away the pain and I got an allergy to it. They took me off it and then when rash went away retried with reduced dosage. Rash came back. Did this several times and then decided I could not use it anymore. :eek: So if anyone would like to discuss this with their doctor and does not use it more than once or twice a day, they might get some relieve. Now on Neurontin and Clonmazepam, plus Celebrex for my arthritis. Also go to pool for hour long aqua therapy twice/ three / four times a week as I can and find it enables me to get full range of motion and reduces pain. I am at about 20% - 50%of what I was in the beginning.
[QUOTE=Jenna Mac]Hi Kate,

So pleased to hear your Ketamine infusion is working.

I have a question for you & for anyone else out there in RSD land - is a Ketamine infusion likely to work on someone with RSD for the past 10 years? I was diagnosed 10 yrs ago after damaging my sub-talar (ankle) joint, but was about 6 months into the condition before a definitive diagnosis was made - and then no suitable treatment plan was ever put in place (basicaly because it was so hard to find a Dr who understood the condition well enough to do so). Due to the RSD being too aggressive now, Doctors are refusing to do an arthroscopy or any other surgical procedure to investigate the extent of the damage to the sub-talar joint (none of this was done immediately after the injury unfortunately) - so I'm desperately trying to find the right pain management program - which is proving difficult..

Any advice greatfully appreciated.

Thanks,

Elaine[/QUOTE]
Jenna Mac - a question for you if you are still looking at this thread - you say that they will not do operation on ankle because it was nerve damage. Did they indicate any specific reason why. i.e do they think it would increase the RSD. Nerve damage RSD is known by CRPS II and I have it in my knee from a car accident. I should be wear a brace but cannot because it rests on the nerve and eventually I should have a knee replacement but my doc says he cannot cut through nerve and i have been trying to find out if other people with the nerve damage type CRPS are getting the same story or if my doc is just afraid to do any surgery. Appreciate any info you can give me re surgery. Thanks Laura.
Thanks Kate, for the thorough honest replies. Glad the parasomnias were transient, if not a benzo &/or clonidine have been reported to help. Yes I think the docs should not forget to mention IV site complications for any IV treatment. Docs, nurses and patients should be vigilant of these & prospective patients can do a google search and ask their doc so that they can give further informed consent. Intractable RSD can be so terrible that I think the risk:benefit ratio can be favorable given everyone is appropriately vigilant & adequate informed consent is given. IV Ketamine protocols with the right precautions appear quite promising for RSD/CRPS.

Unfortunately very few docs are utilizing parenteral ketamine for RSD the US (there are controlled studies underway however). You probably would have noticed a change in your finger pruning had it been affected as it can happen even upon short water exposure. Are you back to swimming yet in the Australian summer?

Few more Qs:

1) Have you noticed any changes in your Memory before/during/immediately after/now since ketamine?

2) You mentioned that your affected limb no longer changes colors or swells since RSD but that there is some thermal sensitivity still? Could you elaborate on this, i.e. do you feel blood flow has improved-normalized, how sensitive is it to hot & cold?

3) Did your doc happen to mention how many CRPS patients he has treated with ketamine (with single or multiple courses)?

Thanks for sharing Kate, :bouncing: Josh
Hi Josh

Well my time is over, back to the rsd. I had 30 amazing days, and it ended very abruptly. There was no gradual return, I went from nothing before dinner 3 nights ago, to a huge flareup after dinner that lasted for 6 hours, regardless of taking an endone.

The next day it was there from the minute I woke up. It hasn't just been aching or mild, its been the worst it could be and staying at this level constantly. We've all been thrown into this headfirst. A couple of days ago I was doing everything for myself and having a great time. Now my husband has had to go back to doing everything for the family, the house, and me. Can't dress myself, can't sit comfortably, nothing. So its been a bit of a shock to the system for all of us. But I've been so grateful to have the length of pain relief that I did get. 30 days, that's just huge. Most of us would be happy to have one day free of pain, I had 30, and I feel overwhelmingly happy and lucky to have had that.

I go back to my doc on feb3rd, so I'll be able to find out if I can have another infusion soon. I hope I won't have to wait too long.

OK, your questions.

The memory thing. Before the infusion, I was very vague, no concentration etc. During the infusion I had a very bad memory and concentration level, due to the inebriation effect of the ketamine. But for the 30 days afterwards (except for the first week home where I was a bit groggy still) I have been fully functioning, organised, my memory has been great, concentration level very high, and just functioning like there is nothing wrong.

I could handle a fan blowing on my arm, or a warm wind, but not an airconditioner or a cold wind. But even then it wasn't painful, just uncomfortable.

My doc didn't mention how many he had done, just that he had been doing the infusions since 1998 and had done hundreds. I had looked into the statistics myself so knew my chances before I agreed to the procedure.

It is summer here, but we haven't gone swimming for a few months. We've had reletives staying one after the other for the past six weeks and just haven't gone to a pool. There is a local indoor one that I could swim in before the infusion, but only for about half an hour, as the water was a little too cold. And when that happens it means my hubby is in the water with our three kids aged 6, 4 and 2, and only the 6 year old can swim. So we don't go often!

I think that's about it!

x Kate
[QUOTE=aicirtapo]Jenna Mac - a question for you if you are still looking at this thread - you say that they will not do operation on ankle because it was nerve damage. Did they indicate any specific reason why. i.e do they think it would increase the RSD. Nerve damage RSD is known by CRPS II and I have it in my knee from a car accident. I should be wear a brace but cannot because it rests on the nerve and eventually I should have a knee replacement but my doc says he cannot cut through nerve and i have been trying to find out if other people with the nerve damage type CRPS are getting the same story or if my doc is just afraid to do any surgery. Appreciate any info you can give me re surgery. Thanks Laura.[/QUOTE]
Hi Laura,

Thanks for your response to my earlier question.

My Doctors are saying that they consider the RSD to be too aggressive and are concerned that any surgical procedure will aggrevate the condition further. I'm at a loss to know where to go or what to try next.

Thanks,

Elaine (Jenna Mac)
Hey Kate, any updates? How did that follow-up visit go? You still out there?

---
Laura, I'd if possible get additional specialist opinions on your case & not go with a surgery that a doctor is not comfortable with. *Preemptive anesthesia as well as post-op analgesia/anesthesia is something to talk to your doc about to limit spread/exacerbation of RSD. This has been done to try to prevent phantom limb pain (PLP) for example where entire nerves/limbs have been operated on.

One reason pain can be felt even where there is no limb in the case of PLP is because chronic pain tends to become increasingly centralized. In the illustrative case of PLP the peripheral nerves/limb may be absent but the Central Nervous System may still have a register for it.

Strategies to prevent PLP phenomenon have included preemptive anesthesia (in addition to typical peri-post op) & in already well established cases of PLP & CRPS there have been some case reports where ElectroConvulsive Therapy has reversed the syndrome even where the patient did not report depression (its typical indication). Arthritis or any ongoing pain has been reported to reactivate/aggravate CRPS so I would expect it should be part of a comprehensive treatment plan.

Best Wishes everyone, Josh
Sorry I haven't been on here for ages, but i thought I better come and do an update!

My first ketamine infusion gave me 30 amazing days of pain relief. But it all came back in one big go, I didn't have any small flare ups first to let me know it was coming back. SO that was hard, dealing with the constant high levels that I had got "un"used to.

But at the start of March, I went in to hospital for my second infusion, again for 7 days. This time they added clonidine to the mix, I took it orally on the last 3 days I was there. I had pain relief from day 2 of being in hospital. I didn't have any dramas with the IV's this time, it was a lot easier.

The first week home, I began lowering my meds. I didn't see the point in having the infusions if I stayed on my meds too. So I dropped down on the baclofen, endep and topamax, and didn't need any endone at all, which was great, as before the infusion I was needing 2-4 endone a day, on top of my other meds.

The second week home I dropped topamax and baclofen totally. I had to lift my endep dose back up though, because although I had no pain, I had become a very very moody mum! So I still needed the antidepressant! But that was fine. I was amazed I could drop my meds and not even need a paracetemol, let alone the strong stuff my body is so used to.

I'm now on day 31, so I'm into overtime, as I had 30 days relief from the first infusion. Although this one is already better, as I didn't stop my meds the first time round.

Yesterday I burnt my fingers and thumbs on both hands really badly (on a plate that was straight out of the oven), and started having rsd pains- my hand and my whole arm flared up for about 8 hours with endone giving no pain relief. I was worried that I had prematurely brought back the rsd, but today has been great. I had joint pain in my knuckles for about 2 minutes, but that's been it all day- can't complain about that!!

So I'm still day counting, if I have to go back on my meds, that's fine, as long as it controls the pain I'll still consider the infusion successful.

I'll keep you posted on how things go!

x Kate





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