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.

Have 2 autoimmune diseases. Read article in JAMA or Lancet about endocrine malfunction and autoimmune diseases. Went to endocrinologist, who fortunately had read same article. Diagnosed with adrenal glands growth. Following up with surgeon.

REPLY

Hello, I’m Don from the Orlando, Fl. area. I’ve studied many medical disiplines looking for inexpensive solutions with no known side effects.
offering information for others to consider after checking it out.

REPLY
@wbert93

I was doing physical therapy, but could not continue as was leaving half crippled and really not doing much. I am replying from the grocery store. Which i have made it half way though before back is giving me pain in hips and knees. Walking funny and I am sure making werid faces, people probably wondering what the heck is wrong. I am usually not one to think bad thoughts about myself but this is getting so old. The pain last night was so bad I struggled through hanging and decorating for Christmas with my kids.
I think my body is becoming immune to ibrophen or the pain is that much worse. I have another epidural injection scheduled at the end of the month but work is suffering because of my lack concentration. Sometimes I think I should be stronger than this. Oh well

Jump to this post

Hello and your last line really caught me. I think you are a brave person and guessing big heart.

So…how about starting something easy? When you open your eyes say Lords Prayer and if you have more time, pray for others. You can do it anywhere, anytime. Prayer works…you are going to have a really good day today!

REPLY

Morning! April from Arkansas here. Many ortho surgeries over the years from chronic tendonitis/bursitis. Both shoulders scoped, one of them twice, ten years apart, both elbows, one wrist, left thumb from arthritis and herniated disc in neck from early degenerative disc disease at age 49. I have another disc right below that one that needs replacing and now, at age 55, am in chronic daily pain, in both shoulders again, my hip, knee and now inner elbows radiating down to the wrists, and hands including tingling. Talk about a mess. I take 4 Hydrocodones a day as due to being a gastric bypass patient, not supposed to take NSAIDS. The pain meds barely touch my pain. I have been diagnosed 4 years ago with arthritis in my hip and had a couple cortisone injections in it. The knee pain is 4 months old and started when the car door shut on it as I was getting out of it one day. My elbow/wrist mess is just a few weeks old. I am finally going to start going to see about some of this and hope to get some answers/treatment soon. I have an Ortho appt this week to see about my hip and knee and then will go from there.

REPLY
@sharonmay7

Yes if anyone has ideas of how we can get the attention of higher ups… Please let us know !! Every time I here somethings about pain pills it is always negative. I bet there r more people helped then hurt! Sharonmay7

Jump to this post

@sharonmay7, just for info, there are three kinds of medicines I try to stay away from. First, any kind of painkiller, especially opioids. I get into a psychiatric idiocy, especially from strong opioids. Then after a while, they don’t work anyway. Second, antiseptics such as ampycillin (SP?). I have had a steady infection some place in my body for about 60 years. It is probably from amyloid involvement with the ankylosing spondilitis in my spine. Third, anything that seems to cost too much. I have to take insulin, but by careful diet and exercise, I have worked into a minimal regime. I have several cancers in my body (prostate, bladder, kidney, liver, lung, thyroid, blood, amyloid, lymph, spleen, etc. Now my doc thinks I have cancer (protein deposit) in my brain, so I have now had a MRI to check it. But in any case, I still think it is most appropriate to stay away from most medicines. I know I have only a short time to go, but at 76, that’s OK.

REPLY

I went to see a pain specialist a few months ago. I was in terrific pain all over my body. He tried to get me to go on cannabis. When that effort failed he tried oxycodone. I wrecked my car in my own driveway, so I gave that up

REPLY

I experienced a trimalleolar fracture of my right ankle in 2011 and then had problems with the hardware on the fibula–it shredded my peroneal tendons and that took awhile to be diagnosed. As a result, I also have complex regional pain syndrome. Symptoms started in 2012 and CRPS wasn’t identified until 2015. It started in my right ankle and has now spread up my right leg, to my left knee, to my left hand and arm and in my face. I have been treated in a variety of ways, but currently it’s primarily medications including ketamine infusion treatments. Have been continuing my PT in order to try to maintain as much function as possible to enhance quality of life. Sometimes it is overwhelming, and frankly scary as it is not always clear what it is doing to my body and brain. Wasn’t sure if this was the forum or the brain/nerve one.

REPLY
@wbert93

I was doing physical therapy, but could not continue as was leaving half crippled and really not doing much. I am replying from the grocery store. Which i have made it half way though before back is giving me pain in hips and knees. Walking funny and I am sure making werid faces, people probably wondering what the heck is wrong. I am usually not one to think bad thoughts about myself but this is getting so old. The pain last night was so bad I struggled through hanging and decorating for Christmas with my kids.
I think my body is becoming immune to ibrophen or the pain is that much worse. I have another epidural injection scheduled at the end of the month but work is suffering because of my lack concentration. Sometimes I think I should be stronger than this. Oh well

Jump to this post

@wbert93, You have quite the history. My heart is sadden by all your complications.

I use to take ibuprofen daily at night but I ended up with very negative side effects. Curious if the amount of Ibuprofen you are taking has had any negative side effects?
This medicine may raise your risk of having a heart attack or stroke. May also cause bleeding in your stomach or intestines. These problems can happen without warning signs. This is more likely if you have had a stomach ulcer in the past, if you smoke or drink alcohol regularly, if you are over 60 years old, if you are in poor health, or if you are using certain other medicines (a steroid or a blood thinner) .

I am curious if you’ve looked into the Mayo Clinic’s Pain Rehabilitation Program? You certainly sound like the perfect candidate. Here is a link, might be a great topic for your next pain clinic appointment.

http://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/overview

Best of luck
Dawn

REPLY
@sutherlin

I’m hoping someone can give me lower back and core exercise suggestions to help strengthen the muscles in my lower back to help keep it steady, but yet not cause more issues with the back.

Jump to this post

Leg and abdominal exercises are good for lower back pain start with only 5 reps for a week or 2 and add a few at a time.

REPLY
@wbert93

I was doing physical therapy, but could not continue as was leaving half crippled and really not doing much. I am replying from the grocery store. Which i have made it half way though before back is giving me pain in hips and knees. Walking funny and I am sure making werid faces, people probably wondering what the heck is wrong. I am usually not one to think bad thoughts about myself but this is getting so old. The pain last night was so bad I struggled through hanging and decorating for Christmas with my kids.
I think my body is becoming immune to ibrophen or the pain is that much worse. I have another epidural injection scheduled at the end of the month but work is suffering because of my lack concentration. Sometimes I think I should be stronger than this. Oh well

Jump to this post

See pain doctor for strong enough medications.

REPLY
@aprilarlady

Morning! April from Arkansas here. Many ortho surgeries over the years from chronic tendonitis/bursitis. Both shoulders scoped, one of them twice, ten years apart, both elbows, one wrist, left thumb from arthritis and herniated disc in neck from early degenerative disc disease at age 49. I have another disc right below that one that needs replacing and now, at age 55, am in chronic daily pain, in both shoulders again, my hip, knee and now inner elbows radiating down to the wrists, and hands including tingling. Talk about a mess. I take 4 Hydrocodones a day as due to being a gastric bypass patient, not supposed to take NSAIDS. The pain meds barely touch my pain. I have been diagnosed 4 years ago with arthritis in my hip and had a couple cortisone injections in it. The knee pain is 4 months old and started when the car door shut on it as I was getting out of it one day. My elbow/wrist mess is just a few weeks old. I am finally going to start going to see about some of this and hope to get some answers/treatment soon. I have an Ortho appt this week to see about my hip and knee and then will go from there.

Jump to this post

See about autoimmune disease such as fibromyalgia or peripheral neuropathy. Maybe opioid is indicated.

REPLY
@oldkarl

I went to see a pain specialist a few months ago. I was in terrific pain all over my body. He tried to get me to go on cannabis. When that effort failed he tried oxycodone. I wrecked my car in my own driveway, so I gave that up

Jump to this post

Can’t take oxycontn or oxycodone get agitated. Morphine helps with fibromyalgia and autonomic peripheral neuropathy pain.

REPLY
@janetdh

I experienced a trimalleolar fracture of my right ankle in 2011 and then had problems with the hardware on the fibula–it shredded my peroneal tendons and that took awhile to be diagnosed. As a result, I also have complex regional pain syndrome. Symptoms started in 2012 and CRPS wasn’t identified until 2015. It started in my right ankle and has now spread up my right leg, to my left knee, to my left hand and arm and in my face. I have been treated in a variety of ways, but currently it’s primarily medications including ketamine infusion treatments. Have been continuing my PT in order to try to maintain as much function as possible to enhance quality of life. Sometimes it is overwhelming, and frankly scary as it is not always clear what it is doing to my body and brain. Wasn’t sure if this was the forum or the brain/nerve one.

Jump to this post

Chronic pain and autoimmune diseases go hand in hand. Stronger medication may be indicated.

REPLY

Hi,
My name is Momi. I’m 52 years old and have been having a lot of medical problems for almost 5 years now. It started with renal failure due to contrast die for a CT scan. I was on dialysis for almost 4 months with no progress until I came to Mayo for a second opinion and was found to have an underlying kidney disease, Minimal Change Disease. I was treated with steroids, started recovering and tapering off the prednisone. I began having a lot of pain all over at that time. I then relapsed with the kidney disease and had to go back on the prednisone which took my pain mostly away. I thought the pain was from the prednisone withdrawal so tapered VERY slowly, working with an endocrinologist but the pain was still there. Eventually I was seen by rheumatology and diagnosed with undifferentiated spondylitis and fibromyalgia. I have also had 3 pulmonary embolisms and a DVT during this time, as well as being hospitalized for pneumonia. The thrombophelia doctor believes I’m getting the PEs as an added bonus of having autoimmune diseases as I have no other clotting disorders/factors. I also ended up with another autoimmune disease called lichen sclerosus. I also had 2 teeth break off at the root and a broken ankle from doing nothing in particular, though all my bone density tests come out fine. Anyway, I’m on blood thinners for life probably, as well as prednisone at a low dose. I tried humira for the spondylitis without much result. I’ve been having remicade infusions for the last year and a half which helps somewhat. I have a lot of back/neck/shoulder/elbow/fingers/hips/knee/foot pain, especially where the ligaments attach to the bone. I tried gabapentin and cymbalta and had to discontinue from terrible side effects. I can’t take any NSAIDs because of my kidneys. I do physical therapy, warm water therapy, acupuncture, yoga and meditation, aromatherapy, psychotherapy, eat a clean diet with very limited results. I take oxycodone regularly which helps me to function at least a little. I am no longer able to work which breaks my heart as I loved my job. I haven’t been able to fully accept the reality of my new life and the fact it probably won’t get much better. I’ve been really depressed and anxious as a result and also take meds for that. I went to the Mayo’s 2-week outpatient Mood Disorders Program this fall as I had been feeling so down, and sometimes suicidal. While it was a good program and I certainly learned some new skills, I’m not sure it was the right fit for me. Maybe I should have tried the Chronic Pain Program. I also attended the 3-day fibromyalgia program at Mayo the year before and I think I didn’t go the the Chronic Pain program thinking it was probably a more intensive version of what I learned in the fibromyalgia program. I just wish for a way to come to accept and move forward in this new life with gratitude and happiness. I mostly live with a feeling of loss and hopelessness. Sorry for the long version… I look forward to connecting with others going through the same sort of things.

Liked by persist

REPLY
@wbert93

I was doing physical therapy, but could not continue as was leaving half crippled and really not doing much. I am replying from the grocery store. Which i have made it half way though before back is giving me pain in hips and knees. Walking funny and I am sure making werid faces, people probably wondering what the heck is wrong. I am usually not one to think bad thoughts about myself but this is getting so old. The pain last night was so bad I struggled through hanging and decorating for Christmas with my kids.
I think my body is becoming immune to ibrophen or the pain is that much worse. I have another epidural injection scheduled at the end of the month but work is suffering because of my lack concentration. Sometimes I think I should be stronger than this. Oh well

Jump to this post

To @mikee     My pain dr and neurologist keep bouncing me back and forth. So far none of the meds I have tried in some 20 years have helped, or bad reactions to them. So many allergies to meds. Even tried expensive spray of CBD oil – no relief from RLS and probably neuropathy. Have had 5 back surgeries, numerous epidurals, and ablation. I am in god awful pain back and legs.    @ladyjane85

REPLY
Please login or register to post a reply.