CRPS T1 Spreading, Pain, Walking..Plain simple just need some advice

Littlepaw · 11-10-2015, 03:54 PM

Lessa,

Congrats on the device coverage! Thanks for clarifying your imaging, I am glad you had that done. Not everyone has so I just like to be sure those bases have been covered.

I second Catra on the rolling walker, mine had a seat also and it was a Godsend when I was using it. She didn't mention that she had a beautiful baby girl after her diagnosis of CRPS - a testament to the wonders that can be accomplished even with this disease. I'm pretty sure she has most of us beat in the "fun and amazing things done after CRPS" category.

The PeaPure (palmitoylethanolamide) that Bio spoke of is available online. In the US we have to order it from the Netherlands. Maybe you have it there. I have taken it off and on from the beginning.

Also, my gait was totally jacked and I had to relearn how to walk in the pool since gravity was just too much at first. That is a great place to start.

PurpleFoot721 · 11-10-2015, 04:09 PM

Quote:

Originally Posted by Lessa

Oh my goodness a wonderful update!!!!!!

There is funding available to me as a military spouse to get walking aids/wheelchairs/etc!! I'M SO FREAKING HAPPY!

That is wonderful news. Yay!!! You posted this while I was typing my last message. I didn't find out about it until just now.

DejaVu · 11-11-2015, 01:04 AM

Great news, Lessa!

Much Love to you, to your wife and to your kitties.

DejaVu

Lessa · 11-11-2015, 03:19 AM

@Bio I have written down all these and the next time I'm by a healthfood store/supplement store I'll take a quick look and see what they have in stock! I take vitamin d3, as it is awefully dreary here during the winter with all the rain and no sunshine. As well as cranberry pills (UTI related). I also usually take a multivitamin. Sometimes I forget to though gah! As for needles, I always inquire why I need them, what's it good for. Can we just take a urine sample instead? I don't enjoy being poked (though my numerous tattoos and piercings say otherwise..hmm). I have noticed if I say...whack my knuckle on something it smarts for a longer time than it should, and it hurts way more than it should. I'm very clumsy and accident prone naturally, so now I fear I may just have to live in a bubble to stop my clumsy nature!

@Enna cold feet run in the family for some odd reason. I have been poked and prodded and there should be no reason why they get cold. They just do. Silly things, its usually not terrible just minorly cold. Only becoming very cold if its freezing outside and I've refused to wear socks. I also hate things on my feet, and the theory is I'm just not wearing socks, or slippers, or something, enough to help maintain the temperature in my feet. Now though, I will be wearing socks and I can feel the cold radiating from them. It takes forever for my natural body heat to warm up my toes =(

@All Thank you so much! Its a huge huge stress of my plate to be worried about devices to aid for mobility. They also will help with finding a new place and any renos we have to do. Needless to say I'm ever greatful for them. I appreciate all the out pour of love and support, its been really needed, and awesome at this time.

@Little When my ankle started acting up in June, I was convinced I had broken something, since it just hurt like no other, I figured I had done something to snap a tiny bone. So I insisted on imaging to get to the bottom of this mystery.

Also we are going to talk to my PT friend about if the pool where she works at can be warmed up. Cold makes me far worse, as I already have cold CRPS, and so a regular pool is out of the question. Hopefully the pool at the PT office can be heated to a more bareable temp for me!

@Deja thank you! We appreciate the love, and send lots back to you and yours. I'm so relieved to hear that we won't have to scrimp too much to get by.

@Purple, my legs are generally elevated a good portion of the day, but I do let them just hang around and be normal. I find its easier to stretch them when they're just being in a normal sitting position. I also ensure not to stack my feet onto of each other. Always having them each with their own area, so no one foot is hurting the other, as it seems with the lack of sensation my feet like to play the game of 'lets be dead weight and hurt the other foot'. Its a wretched game.

BioBased · 11-11-2015, 07:49 AM

D3-the only D worth taking, needs to have K2 with it, to direct calcium to bones and teeth.

D-Mannose powder is one of the best things I ever found to deal with e-coli UTIs. My mother lived with chronic problems until I found this. From 2006 until she died she did not have another UTI. Please check out the reviews on Amazon.

Check to see that your multi contains B12 as methy B, not cyano B.

Ask for pediatric needles. Ask that the area be numbed.

If you have any kind of sinus problem, try XLear. The xylitol in it is the efficacious ingredient. I use it every day.

Also, teeth- xylitol is excellent for dental health. You can buy toothpaste with xylitol or chew xylitol sweetened gum. I read that we have to take super care of our oral health. Floss and brush more.
http://www.dentistryiq.com/articles/...-numerous.html

Liquid lanolin helped my feet on several levels. It seemed to help block drafts lessening allodynia pain. Good for dryness.

megsmountain · 11-12-2015, 01:17 AM

Quote:

Originally Posted by Littlepaw

Hi Lessa,

I am sorry to you are worsening and having to wait to get care. I am also a little concerned about what you might be walking around on. I remember you said MRI would take a million years, but did you ever have imaging of any kind, even an Xray? You said the sprain was off from the beginning...if it didn't heal or you got something like a stress fracture at the same time that will make a difference in your care plan. Pretty hard to get out of CRPS with unaddressed pain contributors...

I don't know financially if going private is something you can consider, but I know many of us have thrown all the resources we could muster at getting help. If you think you could cross the border and get to Seattle you could get private care. I ended up paying for my own MRI twice because it was cheaper that way. Austin prices are not inexpensive but MRI of the ankle and foot to the big toe joint ran only $550. I had to call around as pricing varied up to $1200.
Anyway, it is a thought if you need it....

Also, I am curious if you have tried walking in an Aircast boot? Immobilization is not good for CRPS BUT depending what's going on in there, getting pressure off may help. And you're out of it when not weightbearing. IF you haven't tried it, maybe ask your GP.

To answer some questions...outcome is different for everyone and my walking situation was compounded by surgeries (though I really should've been able to walk and stand within 6-8 weeks) but I went from spending a full year on a scooter with 9 months of that on crutches to walking a mile to 1.5 miles most every day now. It was accomplished through extremely gradual increments starting with going down the driveway. I also had to wean off devices, going from two crutches to one, and some walker use to cane, then nothing. Again, it had to be done slowly.

I had mirror pain in the beginning which I only have on very, very rare occasion these days. I think I have the potential for spread there but getting my pain controlled seemed to stabilize it for the time being. My non-injured foot is now doing great.

On discoloration...oxygenation is a problem. Light compression may be helpful if you can tolerate it. I had to use ACE wrap at first because the socks were uncomfortable.

I personally found tramadol to be helpful for pain. It is not a big gun opiate so GP probably won't mind trying it. It blocks NMDA receptors which is how ketamine works.

Rage, distress, anxiety, bouts of crying....you name it. Most of us have probably felt it at some point. It is really difficult in the beginning. I didn't settle for about a year and half or so. It takes time and support to get through the grieving but it does get easier. Hang in there. There is hope and the potential for healing.

I hope that you get what you need soon. I would imagine there are plenty of treatment options on the U.S. side. If you can pull it off it might be worth your while.

Sending hugs and healing love,

Hi LittlePaw, I'm glad you brought up the grieving part of CRPS. It is so hard being diagnosed and dealing, living with CRPS. I explained to a few close friends that is it similar to going through the stages of grief after you lose a loved one. Denial, anger, bargaining, depression, and acceptance (depending on the resource of the stages). Once you get through the initial stages, life does become easier as you realize you can only control so much and being angry and depressed and focusing on the pain, etc. surely doesn't improve CRPS, it only makes it worse. I know it's hard to not focus on pain when all you can do is curl up in a fetal position and sob because nothing can relieve that pain. I'm not saying not to try and fight with everything you have, but just try and keep things in perspective and try to keep a positive outlook. I actually didn't look up anything even remotely related to CRPS or even discuss it for more than a few minutes for a few years (this was about 2-3 years post diagnosis). Everything I looked up at the time was so negative and just made me think I was going to get worse and made me more depressed. I instead focused on getting better, anyway I could. Oftentimes my plans and goals for betterment had nothing to do with doctor's, many times the opposite. Alternative treatments, ways I could strengthen my mind and therefore my body. Ways to help others so I wasn't so focused on myself. I'm glad there are other like minded individuals on this forum that are focused on healing, not just the negative aspects of CRPS. We are given a unique perspective on life through all the pain and challenges of not being able to do "normal" everyday things that people take for granted. People always say to me "oh, I never even thought of that....when I mention something simple like taking a shower, etc. that can be very difficult for me some days. I guess I'm trying to say, stay strong, try and not be discouraged, even little accomplishments are a fantastic thing!!!

Lessa · 11-13-2015, 12:26 AM

@Bio - I was specifically prescriped D3 just the way it is because my multivitamins come with the K2, and the cranberry has helped me SO much in the past with UTI's that I really don't get any. We use sensidyne here at home, and it has the xyl...whatever stuff in it. Both of us can be sensitive cold so hence the reason.

@Megs - I haven't really let myself grieve, as I was trying hard to 'not be that person' whatever that person is. But now I find going through the motions to be helpful. The only thing I do CRPS related is this forum now, and I try to look at the positive ones, or at least be able to help someone with a post. I've started to make a work out plan with my wife for some safe exercises to help me get back in shape, and just allowed myself to enjoy things without feeling guilty. I have found that explaining to my wife that I'm grieving has allowed her to understand my emotions and be there, being supportive is something that really has helped me! I don't look up cures, and I don't talk about my pain. One of the BIGGEST issues I've had is focusing and talking about my pain. So now I've vowed silence, as a couple of my friends pointed out that's all I talked about. Thank you =D

megsmountain · 11-13-2015, 01:01 AM

Quote:

Originally Posted by swimtime

As far as the sleep goes, melatonin supplements can help with that. It comes in tablet or the kind that dissolves in your mouth. It won't help with pain, but it may help with insomnia.

I know this is a very low level type of help for sleep. I know camomile tea is very calming and helps many people. There is also a "sleepytime tea" by celestial seasonings that helps some. Also, things like not watching TV, being on the computer, or other devices for at least an hour or so before you try and sleep is helpful. I agree as well with swimtime, melatonin is helpful, it can (or at least with me and many friends) gave us really vivid dreams or nightmares. If you absolutely are not helped by natural aids, etc. Ambien and other sleeping pills do the trick, they are very quick acting and even if you are in pain, you will fall asleep. I took ambien for about 4 years, not good, but I couldn't sleep. Ambien (it's generic now) knocks you out. You may be groggy in the morning. Also, you need to be aware that it pretty much does not allow REM sleep (so no dreams). When you stop a sleeping medicine like this, you go into "REM rebound" which is pretty scary as you have non stop dreams/nightmares as your brain is compensating for the lack of the REM sleep. I hope you can get the rest your brain and body so badly need.

megsmountain · 11-13-2015, 01:12 AM

Quote:

Originally Posted by BioBased

Lessa,

My daughter told me evening primrose oil has helped her with her severe menstrual cramps.

I just went through my notes from watching Dr. Chopra, etc.

No electrical stimulation, no nerve blocks, no hyper analgesics, no SCS

No ice

No opiates

Take NAC 600 3x a day and alpha lipoic acid 1200mgs, vitamin C, magnesium

LDN

Also pea pure-not sure about where I found this or the following,

Avoid needle stick trauma.

Chest ports are less painful. Pic lines continuous trauma.

Biobased, Yes, I agree with most of your supplements. Evening primrose is very helpful for "female issues", but should be avoided if you are trying to conceive. I had good luck with NAC for about a month. Then I had issues, honestly I have so many health problems that I don't even recall what the "issues" were (this was over a year ago), they were concerning enough for me to never take the supplement again and return it. Maybe it was a bad batch. I know people think "natural supplements" are just that, natural and safe. I take a lot of supplements so I am not against them by any means. Just try and do the same "vetting" process that you would for a new medicine that is prescribed by your doctor as everyone does not have the same response to anything they put in their body. Take care all!

megsmountain · 11-13-2015, 01:21 AM

Quote:

Originally Posted by Lessa

@Bio - I was specifically prescriped D3 just the way it is because my multivitamins come with the K2, and the cranberry has helped me SO much in the past with UTI's that I really don't get any. We use sensidyne here at home, and it has the xyl...whatever stuff in it. Both of us can be sensitive cold so hence the reason.

@Megs - I haven't really let myself grieve, as I was trying hard to 'not be that person' whatever that person is. But now I find going through the motions to be helpful. The only thing I do CRPS related is this forum now, and I try to look at the positive ones, or at least be able to help someone with a post. I've started to make a work out plan with my wife for some safe exercises to help me get back in shape, and just allowed myself to enjoy things without feeling guilty. I have found that explaining to my wife that I'm grieving has allowed her to understand my emotions and be there, being supportive is something that really has helped me! I don't look up cures, and I don't talk about my pain. One of the BIGGEST issues I've had is focusing and talking about my pain. So now I've vowed silence, as a couple of my friends pointed out that's all I talked about. Thank you =D

Lessa, I think it's healthy to talk about your pain, but with the appropriate audience and at the right time

I know my husband can only handle so much as he absolutely hates that I'm in pain all the time, so sometimes when I discuss it with him, it just hurts him. I've tried to develop and figure out through the years whom I can talk to about this. Some friends I can tell about it sometimes. I've found though, the more you talk about the negative and the pain of CRPS, the worse it gets. You have to vent of course though!!! I find even just writing about my setbacks, etc. sometimes help. I literally will write a rant and just tear up the writings and throw them away. It is cathartic and really makes me feel better just getting the anger about the pain, etc. out of my system. I'm pretty weird though, so what works for me may not work for others

Similar Threads
Thread	Thread Starter	Forum	Replies	Last Post
CRPS spreading?	swimtime	Reflex Sympathetic Dystrophy (RSD and CRPS)	8	05-08-2015 10:51 PM
crps spreading	midget	New Member Introductions	1	01-29-2014 12:28 AM
RSD/CRPS and Spreading	cartee4613	Reflex Sympathetic Dystrophy (RSD and CRPS)	1	07-27-2013 12:43 AM
CRPS pain in toes/feet , practical advice and help? Thanks :(	Brambledog	Reflex Sympathetic Dystrophy (RSD and CRPS)	10	04-18-2013 04:29 AM
Plain & Simple...Hormones suck	watsonsh	Women's Health	6	09-11-2008 08:50 AM

Site Navigation

NeuroTalk Online Support Groups

CRPS T1 Spreading, Pain, Walking..Plain simple just need some advice

NeuroTalk Forums