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Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

kathyv | @kathyv | Mar 18, 2017
In reply to @janetdh "Charlton,I too have RSD/CRPS starting in my right foot from an ankle injury and surgery. It..." + (show)
@janetdh

Charlton,I too have RSD/CRPS starting in my right foot from an ankle injury and surgery. It also has spread to other parts of my body including internal systems. In fact, I visit my GI doctor tomorrow and though she has heard of CRPS, she has never heard of it affecting the body's sphincters so she probably won't be able to treat this very well. The orthopedic surgeon who messed up at the front of this told me that "pain is perception" while the plate he inserted was slicing my peroneal tendons. Try to find a pain doctor with experience of RSD/CRPS. Mine is very supportive. It is scary, but somehow it is necessary to lift up oneself and look for the good things that do exist though it can be extremely difficult to see through the pain and uncertainty. In terms of research, you have probably found that this is an area where much needs to be done and it feels like nothing is happening. I am in the process of participating in a longitudinal study of folks with RSD/CRPS. I have found that this site helps because those who are on it don't need any explanations and truly get it. Be strong.

Jump to this post

Hi Jane-
I'm wondering how you found your longitude study? I have had CRPS for almost 10 years. It started in my right foot and moved up my leg after a back surgery. There seems to be so little out there. I take oxycontin, lyrics, cymbalta... but none really seem to help and the pain just seems to progress. I live in San Diego and have been looking for studies with no luck. Would love to hear any suggestions.

REPLY
janetdh | @janetdh | Mar 18, 2017
In reply to @janetdh "Charlton,I too have RSD/CRPS starting in my right foot from an ankle injury and surgery. It..." + (show)
@janetdh

Charlton,I too have RSD/CRPS starting in my right foot from an ankle injury and surgery. It also has spread to other parts of my body including internal systems. In fact, I visit my GI doctor tomorrow and though she has heard of CRPS, she has never heard of it affecting the body's sphincters so she probably won't be able to treat this very well. The orthopedic surgeon who messed up at the front of this told me that "pain is perception" while the plate he inserted was slicing my peroneal tendons. Try to find a pain doctor with experience of RSD/CRPS. Mine is very supportive. It is scary, but somehow it is necessary to lift up oneself and look for the good things that do exist though it can be extremely difficult to see through the pain and uncertainty. In terms of research, you have probably found that this is an area where much needs to be done and it feels like nothing is happening. I am in the process of participating in a longitudinal study of folks with RSD/CRPS. I have found that this site helps because those who are on it don't need any explanations and truly get it. Be strong.

Jump to this post

The 20-year study is being conducted under the auspices of RSDSA. You can go to their web site and find various research projects that they are supporting.

My CRPS started in my right ankle as well and I take those medications and others with pretty limited success. You might also want to check out CRPS: Princess in the Tower. KNow the name is kind of funky, but they have some good stuff. Think they are out of England. Hope this helps somewhat. With you in spirit

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | Mar 18, 2017
In reply to @briansr "Hi 19lin. I'm to the point that I can't take this much pain. Surgery or pills..." + (show)
@briansr

Hi 19lin. I'm to the point that I can't take this much pain. Surgery or<br />
pills are a waste of time. I've always said , no offense to people that are<br />
suffering with cancer, but after 33 yrs of this I'm backing in to a corner<br />
with no way out. This is like cancer but no dr can tell me how long I have.<br />
I'm now looking into marijuana use in my state. The govener is<br />
decriminalized as of Jan. 2017 and there is a large push to make it legal<br />
for medical use. I want to try it but if my dr tested me I will lose him,<br />
we've had that discussion. I just don't know if it would help, so I'll wait<br />
and see what happens in November when the people in this state will be<br />
given a chance to vote for or against medical use. Both bills won't make it<br />
until Jan. The federal government. has all the the Drs scared because of<br />
the misuse of narcotics. To many people pretend to be in pain just to sell<br />
there medicine, I've seen it add 4 to 500 to there monthly income. This<br />
puts narcotics in the wrong hands. Excuse me for rambling I'm just lost and<br />
don't know which way to turn. briansr<br />

Jump to this post

@amberpep Abby, I made the cannabutter, at 1/3 strength. 2.5 lbs of unsalted butter, 1.5 cups of water, and I left it in the crock pot for 8 or 9 hours. Strained it through cloth into a Pyrex mixing bowl, left it in the fridge for a day, scraped the butter that had hardened on top of the water out of the bowl with a table knife, cleaned it off, and set aside enough to make chocolate chip cookies (a pound for my recipe), and froze the rest of it in jars.

I made a double batch of cookies and froze most of them. I used 2 packages of chips, but replaced one with mint chips, which I'm glad I did, because it hides the weed taste - mostly. Yesterday, I ate 4 cookies, and discovered that 4 make me incoherent. Today, I'll back off to 3. My goal is pain control, not to get high. Trouble is, buying from an uncontrolled source, there's no way to know what the ratio of THC is to CBD. The pain specialist told me to get the lowest THC I could. He explained that THC is what makes you high, and the CBD is the medical part. I think that what I have is heavy on the THC. I imagine I'm more responsive to it because it's the first time. Long time users would probably want 6 or 8 cookies.

I was able to get the surgery scheduled for the spinal cord stimulator implant, in April, after my wife gets back home from helping our daughter for a month after having a baby - her first. I've also met with a therapist, and will see him weekly. It took me a long time to get an appointment, and my mental health was deteriorating over the past few months. As soon as I said the s word, I had their attention.

My job today is to put in all of the molding in the kitchen that should have been a part of the installation. Things like quarter round under the kick space, cabinet to wall finish trim, trim to cover raw edges of plywood. Maybe I'm just too OCD. The cabinets are beautiful custom work. The people we bought our house from weren't into finishing everything they started. The wood floor in the kitchen was beyond overdue for a fresh coat of varnish, so they'll never look new. I put 3 coats of polyurethane on the floor, and before putting everything back in place, I want to do the trim work. I'm also replacing the face trim on the doors in the older part of the house, which will also mean some painting.

Gotta quit writing and get back to work.

Jim

REPLY
Barb | @amberpep | Mar 18, 2017
In reply to @briansr "Hi 19lin. I'm to the point that I can't take this much pain. Surgery or pills..." + (show)
@briansr

Hi 19lin. I'm to the point that I can't take this much pain. Surgery or<br />
pills are a waste of time. I've always said , no offense to people that are<br />
suffering with cancer, but after 33 yrs of this I'm backing in to a corner<br />
with no way out. This is like cancer but no dr can tell me how long I have.<br />
I'm now looking into marijuana use in my state. The govener is<br />
decriminalized as of Jan. 2017 and there is a large push to make it legal<br />
for medical use. I want to try it but if my dr tested me I will lose him,<br />
we've had that discussion. I just don't know if it would help, so I'll wait<br />
and see what happens in November when the people in this state will be<br />
given a chance to vote for or against medical use. Both bills won't make it<br />
until Jan. The federal government. has all the the Drs scared because of<br />
the misuse of narcotics. To many people pretend to be in pain just to sell<br />
there medicine, I've seen it add 4 to 500 to there monthly income. This<br />
puts narcotics in the wrong hands. Excuse me for rambling I'm just lost and<br />
don't know which way to turn. briansr<br />

Jump to this post

It sounds like once you get the amount you need right, you're onto something that will work for you. Good luck. Now if the rest of the medical community would wake up.
Abby

REPLY
GailBL, Alumni Mentor | @gailb | Mar 18, 2017
In reply to @briansr "Hi 19lin. I'm to the point that I can't take this much pain. Surgery or pills..." + (show)
@briansr

Hi 19lin. I'm to the point that I can't take this much pain. Surgery or<br />
pills are a waste of time. I've always said , no offense to people that are<br />
suffering with cancer, but after 33 yrs of this I'm backing in to a corner<br />
with no way out. This is like cancer but no dr can tell me how long I have.<br />
I'm now looking into marijuana use in my state. The govener is<br />
decriminalized as of Jan. 2017 and there is a large push to make it legal<br />
for medical use. I want to try it but if my dr tested me I will lose him,<br />
we've had that discussion. I just don't know if it would help, so I'll wait<br />
and see what happens in November when the people in this state will be<br />
given a chance to vote for or against medical use. Both bills won't make it<br />
until Jan. The federal government. has all the the Drs scared because of<br />
the misuse of narcotics. To many people pretend to be in pain just to sell<br />
there medicine, I've seen it add 4 to 500 to there monthly income. This<br />
puts narcotics in the wrong hands. Excuse me for rambling I'm just lost and<br />
don't know which way to turn. briansr<br />

Jump to this post

Jim, ingested cannabus is much more potent than any other way of taking it. I once had 1/2 a small square of chocolate, like the size of a Hersey square, and I was so stoned I was afraid. I had to talk myself down from the ledge. I never realized how strong ingested pot was. So, you should probably not have even 1/2 a cookie to start and move up from there.

I would love to use marijuana for my pain, but my pain doctor said he can't treat me if I do. Since marijuana is still illegal at the Federal level, he cannot ok the use of it, even though it is legal where I live, California. So, he drug tested me at my last visit. I have never been drug tested in my entire life and im 68 years old.

Good luck with the cannabutter Jim. I hope it helps your pain. By the way, my Medical Marijuana card only cost $100, and that included the tele-doctor meeting. My husband uses the medicinal marijuana for his arthritis, and he hasn't found it to be expensive here. Just an FYI.

REPLY
swiss | @swiss | Mar 21, 2017

Hi from Switzerland - I just joined your group in search of professoinal help - I was born in 1939, always healhy, some 12 years ago I had some strange sensation, cribbling no pain, in my feet and always cold feet and legs, so my MD suggested to check with a neurologist who tols me that I had an
idiopathic polyneuropathy and that there is no cure for it - in these 10 years I visited professors and MD`s all over the country specialized in neuropathic disorders, I was put on Lyrica for years - the pain and inconvenience increased somewhat in the first 5 years but then stayed rather stabile for another
3 to 4 years, I did a yearly electro neurography in order to be able to compare my subjective pain with the objective measuring of the electric transmission
speed of my peripheral nerves. Only twice the results showed an insignificant decrease of the electric signal speed. However in the past 3 years my
pain increased to an extent that I finally accepted to go on opioides beside Lyrica and Gabapentin.
But even there I had to increase the daily intake (presently 400 to 500mg of Palexia.
To protect myself from cold air, I heat up my bedroom to 25°C and keep special thermic cloths including shirts long socks etc. cut to fit
especially feet and leggs. I also need 1mg of Temesta expidet to calm down to catch some sleep. In measuring my oxygene uptake at
night while sleeping, they found I had sleeping apnoes and I now sleep with an airpressure mouth and nose mask. I wake up quite frequently from
pain and try to influence it with cold water feet bath, sometimes cold-hot showers etc. etc.
I am wondering who has similar problems and I wonder what this person is doing to reduce the pain from cold and yet not get to high because
then the pain is triggered on too, especially in the feet. Best wishes from Switzerland

REPLY
2 replies
Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Mar 21, 2017
In reply to @swiss "Hi from Switzerland - I just joined your group in search of professoinal help - I..." + (show)
@swiss

Hi from Switzerland - I just joined your group in search of professoinal help - I was born in 1939, always healhy, some 12 years ago I had some strange sensation, cribbling no pain, in my feet and always cold feet and legs, so my MD suggested to check with a neurologist who tols me that I had an
idiopathic polyneuropathy and that there is no cure for it - in these 10 years I visited professors and MD`s all over the country specialized in neuropathic disorders, I was put on Lyrica for years - the pain and inconvenience increased somewhat in the first 5 years but then stayed rather stabile for another
3 to 4 years, I did a yearly electro neurography in order to be able to compare my subjective pain with the objective measuring of the electric transmission
speed of my peripheral nerves. Only twice the results showed an insignificant decrease of the electric signal speed. However in the past 3 years my
pain increased to an extent that I finally accepted to go on opioides beside Lyrica and Gabapentin.
But even there I had to increase the daily intake (presently 400 to 500mg of Palexia.
To protect myself from cold air, I heat up my bedroom to 25°C and keep special thermic cloths including shirts long socks etc. cut to fit
especially feet and leggs. I also need 1mg of Temesta expidet to calm down to catch some sleep. In measuring my oxygene uptake at
night while sleeping, they found I had sleeping apnoes and I now sleep with an airpressure mouth and nose mask. I wake up quite frequently from
pain and try to influence it with cold water feet bath, sometimes cold-hot showers etc. etc.
I am wondering who has similar problems and I wonder what this person is doing to reduce the pain from cold and yet not get to high because
then the pain is triggered on too, especially in the feet. Best wishes from Switzerland

Jump to this post

Hello @Swiss, welcome to Connect and thank you for joining us from Switzerland! Thank you for sharing your history and complications with the members of the Chronic Pain group.

I think I have an active and ongoing discussion that you may want to check out. It is called, Anyone here dealing with peripheral neuropathy? You can find the discussion using this link, http://mayocl.in/2nGKNZ8.

@swiss, if you follow the previous link, you will find a long discussion on how other members deal with peripheral neuropathy. While some members share similar symptoms as you and some experience neuropathy in a different way, you may find some of the coping strategies, remedies, and medications discussed useful. I look forward to seeing more posts from you soon.

REPLY
kathyv | @kathyv | Mar 21, 2017
In reply to @janetdh "Charlton,I too have RSD/CRPS starting in my right foot from an ankle injury and surgery. It..." + (show)
@janetdh

Charlton,I too have RSD/CRPS starting in my right foot from an ankle injury and surgery. It also has spread to other parts of my body including internal systems. In fact, I visit my GI doctor tomorrow and though she has heard of CRPS, she has never heard of it affecting the body's sphincters so she probably won't be able to treat this very well. The orthopedic surgeon who messed up at the front of this told me that "pain is perception" while the plate he inserted was slicing my peroneal tendons. Try to find a pain doctor with experience of RSD/CRPS. Mine is very supportive. It is scary, but somehow it is necessary to lift up oneself and look for the good things that do exist though it can be extremely difficult to see through the pain and uncertainty. In terms of research, you have probably found that this is an area where much needs to be done and it feels like nothing is happening. I am in the process of participating in a longitudinal study of folks with RSD/CRPS. I have found that this site helps because those who are on it don't need any explanations and truly get it. Be strong.

Jump to this post

That's great information, Jane. It is so frustrating that the pain Docs that we are sent to have no idea what to do. My doctors keep saying that because CRPS effects so few people that the Medical Industry does not want to spend time and money on studies or cures.
Frustrating!!

REPLY
growyourflow | @growyourflow | Mar 21, 2017

Hello-My chronic pain began after a serious head-on car accident. Have gone to chiropractors and they all tell me that my back should be on fire. I do varieties of stretching and will only increase that as one way for me to fight joint stiffness. I am prediabetic and have been diagnosed with arthritis in my lower neck and lower back...most days are good for me however I always manage stiffness and have an ongoing Achilles issue because of it....

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | Mar 21, 2017
In reply to @swiss "Hi from Switzerland - I just joined your group in search of professoinal help - I..." + (show)
@swiss

Hi from Switzerland - I just joined your group in search of professoinal help - I was born in 1939, always healhy, some 12 years ago I had some strange sensation, cribbling no pain, in my feet and always cold feet and legs, so my MD suggested to check with a neurologist who tols me that I had an
idiopathic polyneuropathy and that there is no cure for it - in these 10 years I visited professors and MD`s all over the country specialized in neuropathic disorders, I was put on Lyrica for years - the pain and inconvenience increased somewhat in the first 5 years but then stayed rather stabile for another
3 to 4 years, I did a yearly electro neurography in order to be able to compare my subjective pain with the objective measuring of the electric transmission
speed of my peripheral nerves. Only twice the results showed an insignificant decrease of the electric signal speed. However in the past 3 years my
pain increased to an extent that I finally accepted to go on opioides beside Lyrica and Gabapentin.
But even there I had to increase the daily intake (presently 400 to 500mg of Palexia.
To protect myself from cold air, I heat up my bedroom to 25°C and keep special thermic cloths including shirts long socks etc. cut to fit
especially feet and leggs. I also need 1mg of Temesta expidet to calm down to catch some sleep. In measuring my oxygene uptake at
night while sleeping, they found I had sleeping apnoes and I now sleep with an airpressure mouth and nose mask. I wake up quite frequently from
pain and try to influence it with cold water feet bath, sometimes cold-hot showers etc. etc.
I am wondering who has similar problems and I wonder what this person is doing to reduce the pain from cold and yet not get to high because
then the pain is triggered on too, especially in the feet. Best wishes from Switzerland

Jump to this post

@swiss

I was diagnosed 5+ years ago with idiopathic peripheral neuropathy, which started with some numbing, and pins and needles on my feet, up to my knees. It gradually became painful, and then burning, mainly the balls of my feet and my toes and heels. So far, my hands just get achy when I'm driving, so I always wear gloves. Beside medications for other things, I'm taking Cymbalta (Duloxetine) and Morphine sulfate contin for the neuropathy pain. I put Lidocaine cream on my feet at bedtime, and other times as needed. It numbs my feet for a couple of hours, long enough to get to sleep. I'm also trying medical Marijuana, and have found that it does help the pain.

I'll hear more from you in the peripheral neuropathy group.

Jim

REPLY
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