HI All -just the quick reply for now, will do more detail later. The Ketamine infusion has markedly decreased creeping neuropathic pain in forearms and lower legs. This is fantastic as I think I was on the way to CSRPS . The burn of Em has also reduced, obviously the key factor will be how long the relief lasts as the whole treatment is a bit of an undertaking. I still have EM ,this treatment is for a break not a cure,but so far so good ,I am enjoying the relief .
To all who have supported me in hospital , thank you , messages of support do help you get through this. Special thanks to Veerla and Mads , regards Tizzy
So glad you have some relief, Tizzy. Take care and take it easy!
What a blessing dearest Tizzy. This is wonderful news, was growing concerned hadnt heard from you.
Praying that it gives you extended relief.
Thinking of you
x
Great news Tizzy. I hope it gives you months rather than weeks of relief from the worst of the pain.
Every best wish
Nel
Dear Tizzy,
I hope the break from pain lasts long and that you really enjoy it! Would you say that the heat, redness and swelling are less intense or less frequent? Or is it just not as painful as before?
Best wishes,
Ben
PS: I'm new to the group (though not new to EM), hope it's ok to just write out of the blue.
Hi Ben,
Just to say it certainly is ok to join any discussion you like and great that you have.
Nel
Dear Tizzy,
thanks for the reply. I'm glad the Ketamine actually improved your EM flares. My limited experience in the past with gabapentin, lyrica and amitryptiline has been that they lift my spirits and put the pain at some distance, but they did not affect the EM flares and also had side effects. So it's really good news that there are things that adress the 'key problem' in some way for some people.
I'm myself going to be in the neurology department of our local hospital tomorrow and now I definitely have something to propose if they don't know what to do with me, which is quite possible.
Regards,
Ben
Tizzy said:
Hi Ben- The actual flares are decreased,in both intensity and duration. This effect was noticable in hospital but as the Ketamine infusion needed to be checked so often I had sleep deprivation and I was stressed as I had felt so poorly in the weeks prior - not the best conditions to be noting improvement. Oh ,and the ketamine caused some swelling in my hands and feet,but there was a decrease in classic EM pain at day 3. After the first 24hr there was a decrease in forearm and shin muscle pain. The ketamine swelling went away really quickly once at home and I could see and feel results. I would be over the moon if these lasted, but am trying to be cautious. It was very hard to reconcile the improvement I got with the idea of total cure, which of course had in NO way been promised or mentioned. As Veerla counseled ,hope is a good thing,however sometimes hard to keep in check,but it is hope that keeps us trying. That said ,the improvement to flares has been good!
I was just surprised at how emotionally and psychologically chronic pain and ketamine messed with my head! It was hard to fully recognise improvements until I uravelled some of my emotional response - and I am 53 years old,and usually have reasonable insight. So if this lasts and I have the treatment again I will be better prepared. As results can vary ,remember there are some on the site who regularly have ketamine infusions when things get too much- so even if it doesn't last for me it is still worth considering,just prepare yourself! regards Tizzy
Ben84 said:Dear Tizzy,
I hope the break from pain lasts long and that you really enjoy it! Would you say that the heat, redness and swelling are less intense or less frequent? Or is it just not as painful as before?
Best wishes,
Ben
PS: I'm new to the group (though not new to EM), hope it's ok to just write out of the blue.
Prayers sent to you Tizzy. I hope this continues to help. Danni
I am so glad this has given you some relief and so sorry it was so emotionally challenging. As you said if you need to get this again you will be better prepared emotionally so you hopefully will get all of the help without all of the emotional challenges that came along with it.
Take care,
Alina
So glad you are experiencing some relief, Tizzy.
Oh Tizzy! That is wonderful!!!! I hope that you can do that again soon!
je suis heureuse pour vous. Courage
Alina Delp said:
I get what you are saying Veerla. The flip side of the treatment. I could imagine most any treatment that required such a long hospital stay would cause a similar state of having to accept your situation all over again even without a med that can mess with your mind. Just the intensity and duration of treatment is enough for a lot of people to get higher than realistic expectations. I'm sorry you have to go through the physiological side effects of the treatment but very glad it does offer you some sort of relief which even a little relief can be hard to find.
Hi. Glad to hear good news.
How long as your relief lasted? Did you have any hallucinations from the drug? Any side affects?
Was it done in hospital or office?
What doctor administered?
Hi. I have rsd/crps systemic but worse in my legs and feet with potential symptoms of em on my soles. Cant stand due to pain. Mostly bedridden. When i push through, it kills me for weeks and in bed. My neuro in Phila was planning for me to have ketamine and lido infusion. My hemotologist and rheumo says that it can change your personality permanently and to rethink getting the infusions. Anyone have experiences of such personalty side affects?
Also, does anyone experience any gyno problems or pain? Excruciating pain and unending extreme bleeding led me to hospital who did sono and then outpatient Mri showed adenomyomas in uterus.
Pain on pain. Feeling pummeled.
Trying to see if related to nerve pain or the mast cell issue.
I also had urticaria systemically which put me in the hospital when it revealed itself…intense tingling in throat, eyes, everywhere. Steroids and antihistamine and no scratching helped. It was insidious until it showed as red mystery rashes after a myomectomy.