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.

I’m not sure where this topic belongs. I have Raynaud’s disease. I very very often have extremely ice cold feet. Not just cold, but I feel like I am walking on blocks of ice. Once they get cold it is nearly important to warm them unless I soak in a warm bathtub. Getting cold is not just from being outdoors on a cold day. I can just be in the house and with no apparent cause my feet turn very cold. Does anyone else have this problem? I realize it isn’t much of a problem compared to others.

Liked by rwinney

REPLY
@elmay

I’m not sure where this topic belongs. I have Raynaud’s disease. I very very often have extremely ice cold feet. Not just cold, but I feel like I am walking on blocks of ice. Once they get cold it is nearly important to warm them unless I soak in a warm bathtub. Getting cold is not just from being outdoors on a cold day. I can just be in the house and with no apparent cause my feet turn very cold. Does anyone else have this problem? I realize it isn’t much of a problem compared to others.

Jump to this post

I typed the word impossible in my previous message, but my not so smart phone changed it to important.

REPLY
@jimhd

Hi, @dmac5 I've seen CRPS mentioned from time to time but I really know nothing about it. What doctors is she seeing? How is a diagnosis of CRPS made? It sounds painful, and I surely feel for her and you. I have small fiber peripheral neuropathy with pain pretty much in my feet and ankles, and tingling and pins and needles up to me knees.

Finding treatment and medications can be an arduous task, to say the least. It has been for me. Has she found anything that gives her some relief?

There may be a discussion about CRPS here at Mayo Connect. I'll try to find out. Welcome to Connect. It's been a significant part of my support system for several years. I hope you find some answers soon.

Jim

Jump to this post

Thank you. CRPS is diagnosed with severe burning pain (normally to any limb) after any injury (but not always). The pain worsens and pain does not fit the initial injury; pain scale above child birth. Brain pathways cross and send signals there is still pain, overcompensating. She is under care of pediatrician, physical therapist and psychologist as it is also labeled "suicide disease"; depression can set in quickly. Have spent several weeks, researching, education, vetting therapies/clinics all over the US for children. There are several 9-5 programs: focus on desensitation, intense rigorous physical therapy 5x/week for up to 12 weeks. etc. One therapy I'm exploring right now, that can also help relieve peripheral neuropathy is Calmar Scramble Therapy, have you heard of it?

Liked by mlross4508

REPLY
@elmay

I’m not sure where this topic belongs. I have Raynaud’s disease. I very very often have extremely ice cold feet. Not just cold, but I feel like I am walking on blocks of ice. Once they get cold it is nearly important to warm them unless I soak in a warm bathtub. Getting cold is not just from being outdoors on a cold day. I can just be in the house and with no apparent cause my feet turn very cold. Does anyone else have this problem? I realize it isn’t much of a problem compared to others.

Jump to this post

Hi there! You caught my attention. Last March I was tested for Raynauds but ended by being diagnosed with Chilblains. My feet were frozen all the time which was nothing new but they were also turning all shades of red and purple, sometimes greyish. Sores began breaking out terribly and itching was a whole other level than anything I had ever experienced. I also had been diagnosed withSmall Fiber Poly Neuropathy in February so when I asked my neurologist he just looked at my feet and said…SFPN. By my own research, Raynauds also made alot of sense. I have learned to keep my feet (and hands) extra warm and not let them freeze. Don't quickly put them in hot shower or bath. Transition of temps is very important. Im still freaked out about how my feet looked and felt during this time and the colors they continue to turn. Would love to share pictures but don't want to offend anyone. I have been so curious though about others situations. I hope your Raynauds is under control as best can be and thanks for mentioning it.
Rachel

REPLY
@jimhd

@dmac5 I found a discussion by going to the home page and typing CRPS in the search box. It has been active for two years, so you might get some ideas by browsing through the posts.

Best of luck.

Jim

Jump to this post

Thank you.

REPLY
@rwinney

Hi there! You caught my attention. Last March I was tested for Raynauds but ended by being diagnosed with Chilblains. My feet were frozen all the time which was nothing new but they were also turning all shades of red and purple, sometimes greyish. Sores began breaking out terribly and itching was a whole other level than anything I had ever experienced. I also had been diagnosed withSmall Fiber Poly Neuropathy in February so when I asked my neurologist he just looked at my feet and said…SFPN. By my own research, Raynauds also made alot of sense. I have learned to keep my feet (and hands) extra warm and not let them freeze. Don't quickly put them in hot shower or bath. Transition of temps is very important. Im still freaked out about how my feet looked and felt during this time and the colors they continue to turn. Would love to share pictures but don't want to offend anyone. I have been so curious though about others situations. I hope your Raynauds is under control as best can be and thanks for mentioning it.
Rachel

Jump to this post

…and yes, my body can be sweating but, feet frozen too! For me I've learned that my small fiber nerve damage effects the blood vessels from opening thus restricting circulation. Dr mentioned I could take meds in winter months to help.

REPLY
@lioness

@jimhd Glad to hear this about Humana I'm starting in Jan. and want my Rx ,perscriptions, sent from the mail order . So they have there own is it hard to set up I had another one but had to jump throw hoops to set it up .

Jump to this post

@lioness @pfbacon

I have a financial advisor who, among other things, keeps an eye on my health insurance supplemental policies. I had the Humana Walmart plan for several years, but they made changes to it, raising the premium a lot. Their intention was to just roll me over to a revised plan with the same name. So, our advisor called and pointed this out and recommended a few other plans.

Humana has 3 plans, and I chose the Basic RX plan. It's the mid range one. The deductible is over $400, but I'll probably reach that in a couple of months. If I remember correctly, the deductible doesn't count tier one medications, but several of mine are tier 2 or 3. I'm not positive about the tier I thing. Most of my wife's meds are tier I.

The pharmacy copay is $00 on some meds and $8. on most others. I do have a couple of meds that cost a little more, but nothing that would break the bank.

I'm fairly certain that if you go to Humana.com, you can select one of the plans, and when it's time for a refill on your medication, ask your doctor to send it to Humana Pharmacy. You can take a picture of a medication bottle, and send it to them, they will transfer it to your Humana Pharmacy account.

Jim

REPLY
@dmac5

Thank you. CRPS is diagnosed with severe burning pain (normally to any limb) after any injury (but not always). The pain worsens and pain does not fit the initial injury; pain scale above child birth. Brain pathways cross and send signals there is still pain, overcompensating. She is under care of pediatrician, physical therapist and psychologist as it is also labeled "suicide disease"; depression can set in quickly. Have spent several weeks, researching, education, vetting therapies/clinics all over the US for children. There are several 9-5 programs: focus on desensitation, intense rigorous physical therapy 5x/week for up to 12 weeks. etc. One therapy I'm exploring right now, that can also help relieve peripheral neuropathy is Calmar Scramble Therapy, have you heard of it?

Jump to this post

@dmac5 I haven't heard of that therapy. I hope that her doctors take her pain seriously and don't push the psychotherapy route on her without doing anything medically. I've been down that road, and benefited very little from things like pain therapy.

Jim

REPLY
@dmac5

Thank you. CRPS is diagnosed with severe burning pain (normally to any limb) after any injury (but not always). The pain worsens and pain does not fit the initial injury; pain scale above child birth. Brain pathways cross and send signals there is still pain, overcompensating. She is under care of pediatrician, physical therapist and psychologist as it is also labeled "suicide disease"; depression can set in quickly. Have spent several weeks, researching, education, vetting therapies/clinics all over the US for children. There are several 9-5 programs: focus on desensitation, intense rigorous physical therapy 5x/week for up to 12 weeks. etc. One therapy I'm exploring right now, that can also help relieve peripheral neuropathy is Calmar Scramble Therapy, have you heard of it?

Jump to this post

@dmac5

I had to stop writing earlier. Dinner was on the table.

I'm not sure how CRPS wound up with the label "suicide disease". It seems kind of strange.. I know that many medications carry the warning that taking them may cause suicidal thoughts. But that's generally a pretty low chance. In general, that warning is a way to avoid lawsuits.

I started taking antidepressants back in 2004, and every one of them carries that side effect. I tried a bunch of antidepressants before I found one that worked. Along the way, I did experience suicidal thoughts with one of they, exactly the way the label says. On week 5, for a week, I had very strong thoughts of suicide. Exactly a week later the thoughts were gone. So I no longer ignore those possible side effects.

Depression is almost a certainty with chronic intractable pain. I was being treated for depression quite a few years before I began feeling the effects of peripheral neuropathy. I learned that my pain and depression feed on each other. Pain impacts my depression, and likewise, depression worsens the effect that pain has on me.

Our daughter went through a period of depression in high school, and I think that living with a severely depressed father might have helped her understand what she was feeling. We were able to have some healthy conversation about it. Her depression lifted in time, but she has bouts of it from time to time. When I started therapy, she and my wife joined me sometimes, and she continued to meet with the psychologist after I moved on to another therapist.

A very high percentage of people who commit suicide were depressed or had related mental health issues. But the reverse is a different story. I don't know the statistics, but it's a small percentage of people with a mental illness who commit suicide. Certainly, it's something to be aware of, but unless she expresses thoughts of wanting to die, I think you will have a lot of things to deal with without piling on being worried about suicide.

When did you hear that label of suicide disease? I hope that it didn't come from a doctor. Maybe you read it somewhere. If your daughter hasn't heard it, my feeling is that it would surely be counterproductive, to put it mildly, to mention it to her.

Not knowing what the future holds is hard to handle. The journey to finding viable treatment can be long and full of challenges and disappointment. But hope brings courage. And courage strengthens hope.

Have a good week.

Jim

REPLY
@jimhd

@lioness

How did you sign up for the Humana policy you have? If you have an agent, they could walk you through it. If you want to you can go online to your current account and look up the prescription mail order pharmacy. If you need help, I can help you figure it out. Obviously I'm not employed by Humana. In fact I'm not employed by anyone.

Jim

Jump to this post

@jimhd Hi Jim Yes I had an agent who signed me up for Humana I haven't looked into the pharmacy order and how to go about it ,thanks I will take you up on that if I cant figure it out . I'm not employed either put in my time and retired

REPLY

I don't do mail order with Humana since they royally screwed up a prescription of mine – they withheld the medicine and wouldn't tell me why or call my doctor either – they could have killed me. They were unapologetic. Peggy

REPLY

RESPOND TO MINE

REPLY
In reply to @davidadams123 "RESPOND TO MINE" + (show)
@davidadams123

RESPOND TO MINE

Jump to this post

@davidadams123 I see that your original post was under another conversation, so I will respond there.

REPLY
@dmac5

Thank you. CRPS is diagnosed with severe burning pain (normally to any limb) after any injury (but not always). The pain worsens and pain does not fit the initial injury; pain scale above child birth. Brain pathways cross and send signals there is still pain, overcompensating. She is under care of pediatrician, physical therapist and psychologist as it is also labeled "suicide disease"; depression can set in quickly. Have spent several weeks, researching, education, vetting therapies/clinics all over the US for children. There are several 9-5 programs: focus on desensitation, intense rigorous physical therapy 5x/week for up to 12 weeks. etc. One therapy I'm exploring right now, that can also help relieve peripheral neuropathy is Calmar Scramble Therapy, have you heard of it?

Jump to this post

I have had CRPS for over 5 yrs so I’m sorry to hear about your situation. I have tried so many different treatments that only helped temporarily or didn’t help at all.
I was finally introduced to MFR, or Myofascial Release. It is a very specialized form of PR, but with so much more experience and specialized training.
I have been given a new lease on my quality of life since finding this type of therapy.
I would suggest to look in your area for someone who has been trained and certified by the John F Barnes treatment of MFR. Don’t accept someone who SAYS they know who to do MFR, they need to be trained in that specialty, not just regular PT.
GOOD LUCK

REPLY
@mlross4508

I have had CRPS for over 5 yrs so I’m sorry to hear about your situation. I have tried so many different treatments that only helped temporarily or didn’t help at all.
I was finally introduced to MFR, or Myofascial Release. It is a very specialized form of PR, but with so much more experience and specialized training.
I have been given a new lease on my quality of life since finding this type of therapy.
I would suggest to look in your area for someone who has been trained and certified by the John F Barnes treatment of MFR. Don’t accept someone who SAYS they know who to do MFR, they need to be trained in that specialty, not just regular PT.
GOOD LUCK

Jump to this post

@mlross4508 @dmac5 Myofascial release is wonderful. It takes patience and it works. I've been doing this for several years and even had some great progress yesterday while working a tight muscle that my PT worked on earlier in the week that has been interfering with my breathing for a few years. I have thoracic outlet syndrome which is a nerve entrapment problem caused by tight fascia, and MFR helped with my recovery form spine surgery and breaking up the surgical scar tissue. My PT is an expert level therapist in the John Barnes methods and taught me a lot. We have a Connect discussion on MFR at this link where I've collected some information and videos. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

REPLY
Please login or register to post a reply.