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.

@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.

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To @mikee      Do not know whom you are responding to since you do not mention names. Just wrote about my case where no med including narcotics have helped. Along with the back and leg pain, I do have fibromyalgia.    from @ladyjane85

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@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.

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Hello @janetdh, and welcome to Connect. CRPS, also known as RSD, sounds like a scary thing to be dealing with. It is good that you are continuing your PT and working with your physician to try and manage your symptoms. CRPS would qualify for either forum, whether it be pain or brain/nerve, so you did not post incorrectly.

You may want to check out some earlier discussions that took place on Connect regarding RSD/CRPS. In these discussions you will meet some other members who have experienced symptoms similar to yourself and may find some other ways to handle the syndrome.

– After knee replacement, I developed RSD http://mayocl.in/2cX10nN
– RSD/CRPS http://mayocl.in/2dk3ucb

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@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.

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Hello @ladyjane85, are you responding by email? We are aware that it is difficult to know who a person is responding to via the email notifications that we receive.

However, if you are responding by email, it may help if you scroll to the bottom of the email notification and click on the blue “VIEW & REPLY” button. By clicking on that button, you will be taken to the Connect site and directly to the response. Then you will be able to see the whole conversation and who other members are replying to. I hope this helps clear things up just a bit.

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@momij

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.

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Hello @momij, welcome to Connect. Thank you for your detailed post about the challenges you are facing with all of your diagnoses. You don’t need to apologize about how long your posts are as that is what this community is for. Connect is a great place to share your thoughts and experiences with other members so that we can all learn from one another and give positive support to other members experiencing similar situations.

Here are some conversations happening on Connect that you may want to read through and partake in regarding some of the diagnoses you have:

– Ankylosing spondylitis http://mayocl.in/2dvmQk2
– Fibromyalgia pain http://mayocl.in/2hgUGcv, this topic also has a lot of discussion that includes Gabapentin and its effectiveness/side-effects as well
– Pain rehabilitation http://mayocl.in/2hj0DBM
– How many people have autoimmune diseases or even know what they are? http://mayocl.in/2h38vbb, a few members discussed having lichen sclerosus

These are just a few conversations to help you get started and help you get Connected with other members. I look forward to seeing more of your posts in the near future @momij.

Liked by persist

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@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.

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Thank you @JustinClanahan    from @ladyjane85    I have done both, but w/ so much incoming mail from May connection I want to zoom thru it on email and delete what I do not want to discuss, so easiest is that people always say up front who they are replying to. Courtesy.  

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@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.

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Thanks, will check. Have been on ketamine infusion therapy for almost a year; my CRPS continues to spread. My neurologist is making a referral for Calmare (Scrambler) therapy, but they informed me have to be off my gabapentin and ketamine for 6 months prior to changing treatment. Am nervous about changing.

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@19lin

@kelseydm: When do you think the revised web site you spoke of will be complete? I still have a lot of trouble with this system. It is hard to find an individual and reply to their post. On memorial day I made it to the cemetery to put some decoration on my families graves with my kids, but the rest of the time I stayed home the weather was changeable and that means more pain for me. I hope you and everyone had a better time. 19lin

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I agree with this.

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@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

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Ladyjane85. I can relate to everything you’ve said. Since being diagnosed with fibromyalgia in’85 have been treated and mistreated by every type of specialist there is. The oxy’s, oxycodone and oxycontn, have been more of an irritation than a help. Tramadol was an agitation to my already frail nerves. RX marijuana wasn’t a success because can’t control dosage.

The only thing I found that helps is morphine but difficult to get prescription, thanks to DEA . Rest and mindless TV help but accomplish nothing so guilt creeps in.

I’ve gotten dog. He makes me get out and walk. Also if I yell at the TV, people think I’m talking to him not just babbling.

Liked by persist

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@sutherlin

High my name is Katie and I just posted as sutherlin about lower back pain. Hope to find some answers, suggestions etc.

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Sutherlin, I also used to have lower back pain. The only way I ever found to control the pain has been a lot of exercise. Leg lifts with a very flat back, and lots of situps. Got to start very small, two or three at a time, two or three times per day. I found that 6-10 months of this has always worked. Usually I have worked up to about 50 per session. Makes the muscles very strong. But always start very small. One or two at a time if it hurts at all.

Liked by edieguinn

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@sutherlin

High my name is Katie and I just posted as sutherlin about lower back pain. Hope to find some answers, suggestions etc.

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@oldkarl, thanks, I have been doing leg lifts, side leg lifts, small pelvic bridges, and haven’t really had much success but I do them at least 3-4 times a week, about 30 each. Just have to keep moving.

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Hello, my name is Marcia and I am 66 years old. I am facing the possibility of spinal fusion surgery because I have chronic pain and stiffness. My previous MRI of a few years ago showed spinal stenosis and spondylolisthesis. Another MRI scheduled for Jan 17 because I am getting progressively worse and have been told that I am a candidate for surgery. I am a caregiver for my husband who just went through a year of hell with CHF, defibrillator/pacemaker implant, and three surgeries for bladder cancer, and subsequent chemo. I’m just not sure what to do about surgery for myself, given his weakened condition and high anxiety. I know that assisting him with bathing and dressing, etc., does not help my back, nor does cleaning the house or even walking through a grocery store. Does anyone have any suggestions? I fear losing more mobility permanently.

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Hi, I’m a newbie. After a fibromyalgia diagnosis, I had the great misfortune of a MRSA infection which involved 18 days in the hospital and a very close call. Survivor is my middle name and point of pride. But, after 7 years, one area of pain in my back is still devastatingly unbearable. Nothing helps and I feel very isolated with this issue. Still manage an otherwise happy life with great spousal support. hill

Liked by jewel8888

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@19lin

@kelseydm: When do you think the revised web site you spoke of will be complete? I still have a lot of trouble with this system. It is hard to find an individual and reply to their post. On memorial day I made it to the cemetery to put some decoration on my families graves with my kids, but the rest of the time I stayed home the weather was changeable and that means more pain for me. I hope you and everyone had a better time. 19lin

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I have the same experience but also have other triggers of chronic severe pain.

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@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

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The problem with Physical therapy is the time off work. I don’t really have a job that allows for all this time off. The doc appointments are bad enough. Christmas was bad. Finally got another epidural. It takes the edge off for me. I still have pain but pain that is easier to deal with. I have found that i need the antidepressant meds .or my mood is just down. There is still tons of things i can not do that like i did before. I seem to be taking alot more muscle relaxers though to sleep at night.
Along with that though i also have been getting mild to severe leg cramps in the evening. Life is just so grand

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@marilyn624

Hi, I’m a newbie. After a fibromyalgia diagnosis, I had the great misfortune of a MRSA infection which involved 18 days in the hospital and a very close call. Survivor is my middle name and point of pride. But, after 7 years, one area of pain in my back is still devastatingly unbearable. Nothing helps and I feel very isolated with this issue. Still manage an otherwise happy life with great spousal support. hill

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Hello @marilyn624, welcome to Connect. It sounds like you have had quite the journey over the last 7 years, but I love the positive attitude you exude when you say, “Survivor is my middle name.”

I think you may find the following discussion on fibromyalgia pain helpful in Connecting with other members who have experienced frustrations similar to yours. You can find it here, http://mayocl.in/2hgUGcv.

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