Healing vibes please
 

I wanted to jump on here tonight bc I am feeling a little lost, anxious & out of control about what happens in my treatment(which has become my life) after tomorrow. I finally am able to see my specialist after 9 horrible weeks of rupturing a tendon in my foot where I have CRPS (diagnosed 10/14) I e been in horrible pain. The worst it has been. I've had a hard time getting MRIs approved, and docs to understand what I'm going thru and my pain dr has been so busy with SCS procedures that he doesn't have time for pts. His PAs are used for that now and I feel they are only following a script.
I really need help, an open mind for the ketamine infusions and some pain meds. I'm already on cymbolta, sonata, lyrica & tramodal. After this tendon issue my pain is out of control & now I've been in this boot cast with my foot very rapidly atrophying. I'm scared I won't be heard again & I'll lose function of this foot. So I'm asking for all the positive healing vibes & energy I can get.
Thanks everyone & thanks for being inspiring to me on the nights I have a hard time battling this pain. :confused:

Wow how awful!! I broke my ankle, above mt bad rsd foot and had trouble wearing the boot cast thing. It's very uncomfortable and triggered searing rsd pains into my foot. Ended up with a hard cast which made my foot pain much better. I cant believe your pain dr cant squeeze you in for a consult. Maybe he could up your existing meds to help w the pain. I understand your fears about atrophy but once you get into physical therapy those muscles will come back. Walking and exercising your foot in the pool or bathtub will strengthen your foot muscles. Its hard to be patient, but have faith, this too shall pass. Now you have time to relax, sunbathe, scrapbook, or read some good books. Summer is the best time to be in recovery! :wink:

Hi,

I am so sorry you are going through so much. Are you all healed up at this point? Are they doing a repeat MRI before you start PT and such? Just wondering. It is so frustrating sometimes waiting for information and hoping everything is okay. You will feel a lot better once you are able to ditch the boot.

You WILL get through this recovery. It will take persistence and patience but you will get there. I can attest after three surgeries on my foot and ankle in a year and crutches for nine months; that each time I went through the same thing you are, always wondering if I would make a come back, always worrying about the atrophy and loss of range of motion. Every time I got better. Keep at the exercises (making the alphabet, ankle circles, towel pulls, etc )once you are able to start those and don't give up. It may not seem like you are getting anywhere at first but all the sudden you will start making gains. The body has a tremendous capacity for healing. Just remember to take it slow. :wink:

Sending Healing Love, :hug:

This awful. I hope you get the help you need very soon. My problems have been with tendons and ligaments as well as my bones. One of the things that I have been doing is taking gelatin everyday, because the body cannot heal without the proper nutrients.

My sister bought me a large canister of organic cold dissolvable gelatin. For the past month and a half I have taken it everyday in my morning pineapple juice with vitamin c. I just switched to using this every other day, because my nails are growing thick and fast, which indicates to me that my body is utilizing the gelatin.

My sister, she has cancer, who is taking it too, noticed positive skin changes.

Littlepaw gave you good advice. Keeping up your joint mobility is key.

I know you already have had CRPS for a while, so please forgive me for the following, you probably already have the information.

Is your CRPS hot or cold? You might want to buy a Black and Decker leak detector , costs about 25, to keep track of temp changes.

If you have cold CRPS, get a good heating pad.

Avoid ice, it damages the myelin sheath.

If you have hot CRPS, massage with DMSO cream. Massage with MSM cream for cold. I read you can do both, but DMSO is usually most effective for hot CRPS.

The only thing that dulled my pain was hydrocodone. In a year period I got a total of 30 pills. I still have 2. I hoarded them, because they were hard to get and tramodol did nothing. I don't know about your other drugs, because I haven't been able to get anything other than neurontin, which helps with electric pain. In one respect I am fortunate, because by not taking opioids I was able to take LDN. It is to early to tell if it is helping.

I hope you don't mind me asking, but why are you on so many similar drugs? If they are not bringing you relief you might consider asking your doctor if they could be eliminated, one by one. There is a study showing that neurontin and these other drugs interfere with brain synapses. Why take something that is not helping?

My insurance refused my rheumatologist's request for an MRI, after I had a bone scan, so like you I have no idea what is happening to my soft tissue.

Please update us.

Hi InspireToday - sending some positivity your way. Great advice from the posters above. :) All the best - it's always darkest before the dawn.

Hi Inspire,

I am so sorry to hear of your troubles. I also know how scary the unknown is. Just try to stay positive. I know that sounds so cliche, but I truly believe it helps.

Positive vibes sent your way!

Thanks!
 

Thank you everyone! I read and read everything everyone wrote before my appt. it went very well. So well that I felt mentally and physically exhausted after having the dr listen to me. I cried when he walked in bc I was relieved to see him. Now that I'm hopefully on the right path after over 2 months of severe pain. I was given oral ketamine and I'm hopeful. I have to be hopeful because I want something to relief. I just took one so I'll repost after I get an idea of how it helps! Thanks so much everyone!!

Hi Inspire,

So glad you had a good appt. As to your new Oral Ketamine, I have been taking 30-60mg 4 times a day for years and it helps me cope with my Hypersensitivity and Neuralgia. Frankly, I could not do without it, not that I am addicted, it is just that important a part of my pain management regimen.

I look forward to hearing how you get in with it.

Dave.

hi inspire. i'm sorry for all you've been through but at happy that your latest dr visits went well. i hope the ketamine helps you. i take neurontin which helps with my burning electrical pain too and a strong pain killer to help numb the burning aching stabbing cramping pains i get from rsd. i also take antidepressants and antianxiety to help with the emotional pan i'm in from having rsd. and i just started seeing a psychologist who is teaching me about ways to deal with constant pain and stress by using mental imagry sort of like what visionvi has talked about in the past. it seems to help a bit too. i've never tried ketamine but may consider it down the road if all else stops helping. i hope you that the ketamine you take will help and as for mris, i know they are hard to get, but if you really want one and you're dr thinks you need one, he can maybe try to get it approved. my drs have but it just takes time because its such an expensive procedure. my eyes are really starting to get blurry so before i sign off for today i want you to know that no matter what happens you will be okay because there is always hope. that's what gets me through the day. just take it a day at a time. sending soft hugs your way.

New medication change
 

So I've been on the oral ketamine for 24 hrs. I was given capsules of 45mg 3 x a day. The first time I took it, it actually scared me. I felt this completely out of body experience, which isn't so bad but when you aren't expecting it- it can be scary. The second time I laid down and it wasn't as bad. I still wasn't sure if I was experiencing any relief in pain. So today I took my 3rd dose and did a 45 min meditation on pain right when I took it. So that combined with the ketamine actually made my pain a lot better! I'm not exactly sure how I'm supposed to feel or what is norm for this drug. But I've had a lot of energy this afternoon- aches and pains are gone and CRPS pain is almost manageable. The worst part of it is today when I woke up I felt hungover. And this afternoon I've been battling the same hangover type headache and I've drank a ton of water.
For those who take it for a long term do you get use to it? I don't think I could be at my job to the first 20 mins after I take it- I feel too dizzy however after I feel okay. Any insight would be appreciated. ☺️

Hi Inspire,

What a great way to take it, combining Meditation. My Meditative Hour is too early for me to take my night-time dose (60mg), which helps me sleep. In fact, this is the only side effect that has persisted over the years - tiredness - unless I up my dose. I am allowed exceptional use up to 100mg, but that does produce hallucinations so I really avoid it. I only get colours, but with my double vision it is very disorientating.

The best thing I can say about Ketamine is that the potency and effectiveness haven't diminished over the years, I still get the same level of relief even though my pain has increased.

I would say that your side effects should settle quickly if you continue as you are doing. The benefits you are receiving are wonderful!

Dave.

I agree with Dave,

Given a little time to acclimate, your side effects should reduce. 24 hours is no time at all, so knowing that quickly that it does give you relief is a real blessing!

:hug:

hi inspire. just wanted to check in to see how you're doing today. i hope you're feeling a little better today. sending soft hugs your way.
p.s. i've never tried ketamine so i can't help you with how its affected me but i hope that it helps you to feel better soon and that the side effects wear off quickly. soft hugs.

hi inspire. i hope you have a better week this week. sending soft hugs your way.

It's working
 

Hi Everyone,

I aologize for the delay. I have been in the process of moving this past weekend and trying to deal with a high pain level.

The oral Ketamine (45 mgs every 8 hours) really works for me. I pushed myself a little too hard during the move because I am not a person who sits around and watches other people. It's hard to tell where I would be without the Ketamine. I do feel like a new person.

I was scheduled to see an Ortho Surgeon 2 hours from my home yesterday to deal with the Tendon tear.Sadly when I got there I was bullied by a nurse who made me cry. I was so upset by the morale of the office that I left w/o seeing the dr and drove the 2 hours home which was a huge pain trigger. (Don't worry, I am in the process of making a complaint).

I just can't complain too much though because I am walking with crutches and putting weight on the injured foot. I am just amazed by this Ketamine. I really hope it continues to work!

I am so glad to hear the ketamine is helping your pain! That is great news.

What a shame about the ortho appointment. Even if a doctor is great the staff can make or break the practice. It really does sound important to follow up on that injury. Is there anyone else you can see?

Sending hugs and positive thoughts,
:hug:

HI inspireToday,

My heart and prayers are with you . I'm so sorry that you are going through such a hard time .

I know all too well how overwhelming and frustrating it can get even for the most positive person.

I try even though my pain is severe, to keep moving a little throughout the day , even though it's for a matter of minutes at a time.

I hope that you follow what my PT told me once.. She said If I don't use it, I'll lose it.

I will keep you in my prayers every day....:hug: