@notmoff I agree with your counselor Think Positive you,ll have a better quality of live this way I have osteoporosis,fracture L2@L4 Piriformis muscle damage nerve problems can't walk far Dr ordered a scooter for me I'm 80 in Oct still do what I can daily chair exercises if you don't move your muscles you,ll lose them .Be a fighter don't give up
Hi...my name is Jill!! I have suffered from chronic pain from my late teens on!! Its always been my back and limbs! I never participated in gym class but I attended and passed the written tests so. They couldn't fail me...class of '83! Things didn't get really bad until after '02 and the motorcycle accident!! People, I saw the light!!! Anyway, after that I was diagnosed with a whole slew of things that just meant PAIN to me ie: Torsion Dystonia, Scapulacostal Syndrome, Fibromyalgia, Lipedema, Lymphedema, Tremors, Peripheral Neuropathy, Morbid Obesity, Kidney Problems, Steatosis of the Liver, countless "abcesses" in the groin and inner thigh area. An encapulated lipoma on the top of my right foot, not to mention the little to medium to large lumps by the 100's all over my body that burn and flare off my nerves!! It hurts so much that it is unexplainable! I've been researching and believe it is called Dercum's Disease! What a horrible way to live! I would really love some feedback and some insight as to what Mayo Clinic can do for the pain. I cannot find anyone that knows what I'm talking about. One Doctor gave me a diagnosis of "signs and symptoms of dercums disease" but in his words he says "I don't diagnose Dercums Disease, I only treat it". Some people have lumps removed. What I have removed the call "cysts"! But, on my foot is a mass, an "encapulated lipoma"....HELP!!!
THANK YOU
JILL
I appreciate your reading and responding to my post. We all need encouragement here. I realize the counselor was doing her best with a sleep-deprived, teary, frustrated, angry old lady, tired of pain and increasing limitations on mobility and independence.
Like you, I have nerve issues (poor balance due to peripheral neuropathy). I do try to keep moving.
The thought of an electric cart didn't occur to me - it would limit my pain and enable me to grocery shop for myself. Worth exploring.
@notmoff I agree with your counselor Think Positive you,ll have a better quality of live this way I have osteoporosis,fracture L2@L4 Piriformis muscle damage nerve problems can't walk far Dr ordered a scooter for me I'm 80 in Oct still do what I can daily chair exercises if you don't move your muscles you,ll lose them .Be a fighter don't give up
I take 200 mg Tramadol and 900 MG of gabapentin throughout the day. for pinched nerves and arthritis pain. I also take a full aspirin every morning and stil, I cannot walk more than 2 blocks without severe back pain. I am soooo tired. Anybody else who is just fatigued from constant pain?
Hello, I was also taking the same medications for both of the same diseases & others. My doctor prescribed me 1800 MG of Gabapentin, which I thought was ridiculous. I also take Tramadol, 200MG, which only takes some of my pain away. I first started having problems after being rear-ended by a truck in 2008. I was diagnosed with Fibromyalgia. Since then, I was side-impacted by a Ford super-duty truck, then rear-ended while I was parked 10 months later. I also have SLE/Lupus, Sjogrens, Cervical/Lumbar Herniated discs, Pinched nerve/w no reflex in my right arm, DDD, Carpal Tunnel Chronic Pain Syndrome, Carpal Tunnel, Chronic Tendonitis since my accident in wrist/forearm/elbow. Cervical torn ligaments in both accidents, completely torn ligament in the left ankle, my legs swell to the point that I can't walk, Small Fiber Neuropathy, Peripheral Neuropathy, Dry Eye Syndrome, Sciatica. My neck area started swelling after the 2nd accident, and my doctor thought I had tumors. He thought I had a Clavicular fossa mass. I had an ultrasound done, Myositis. Lumps form on my chest since my second accident. No one could tell me what they were! They are muscle spasms. When I turn my neck just a little bit, my clavicular area swells into huge mountains. My neck started getting stuck. Tendons started protruding from my neck during spasms. When my Trapezius and Latissimus Dorsi spasms, I have trouble breathing. I have more problems than I can remember & it's not because I don't take care of myself, it's because of car accidents. The only good thing is, that both drivers admitted fault & their insurance paid to have my car fixed. I get Botox injections every 3 months since my second accident. My pain management doctor doesn't care. I take Tizanidine muscle relaxer, which gives me minimal relief. I literally fall out of bed every day because I'm in so much pain & so fatigued. I also have Hyperparathyroidism. The spasms had my pulse up to 121, my BP elevated, which is bad for my organs, and constant inflammation in my body from the Lupus. I always turned down medication, but I'm 52, in pain 24 hours a day & I feel like I'm going crazy. I'm still in disbelief of all the extra problems that I have since the accidents, especially the last one. My claustrophobia has gotten worse to the point that, I felt like I was shrinking during an MRI & I panicked, My head started getting smaller. I drive my disabled daughter to school 23 miles away. I just look straight ahead & pray. I wear compression sleeves from the swelling of my wrists/forearms, which was caused by banging my arms on the steering wheel, then literally falling onto the steering wheel in the 2nd accident. I'm just frustrated, tired, in pain, scared & disappointed. I'm sorry you are in pain!
Hello, I was also taking the same medications for both of the same diseases & others. My doctor prescribed me 1800 MG of Gabapentin, which I thought was ridiculous. I also take Tramadol, 200MG, which only takes some of my pain away. I first started having problems after being rear-ended by a truck in 2008. I was diagnosed with Fibromyalgia. Since then, I was side-impacted by a Ford super-duty truck, then rear-ended while I was parked 10 months later. I also have SLE/Lupus, Sjogrens, Cervical/Lumbar Herniated discs, Pinched nerve/w no reflex in my right arm, DDD, Carpal Tunnel Chronic Pain Syndrome, Carpal Tunnel, Chronic Tendonitis since my accident in wrist/forearm/elbow. Cervical torn ligaments in both accidents, completely torn ligament in the left ankle, my legs swell to the point that I can't walk, Small Fiber Neuropathy, Peripheral Neuropathy, Dry Eye Syndrome, Sciatica. My neck area started swelling after the 2nd accident, and my doctor thought I had tumors. He thought I had a Clavicular fossa mass. I had an ultrasound done, Myositis. Lumps form on my chest since my second accident. No one could tell me what they were! They are muscle spasms. When I turn my neck just a little bit, my clavicular area swells into huge mountains. My neck started getting stuck. Tendons started protruding from my neck during spasms. When my Trapezius and Latissimus Dorsi spasms, I have trouble breathing. I have more problems than I can remember & it's not because I don't take care of myself, it's because of car accidents. The only good thing is, that both drivers admitted fault & their insurance paid to have my car fixed. I get Botox injections every 3 months since my second accident. My pain management doctor doesn't care. I take Tizanidine muscle relaxer, which gives me minimal relief. I literally fall out of bed every day because I'm in so much pain & so fatigued. I also have Hyperparathyroidism. The spasms had my pulse up to 121, my BP elevated, which is bad for my organs, and constant inflammation in my body from the Lupus. I always turned down medication, but I'm 52, in pain 24 hours a day & I feel like I'm going crazy. I'm still in disbelief of all the extra problems that I have since the accidents, especially the last one. My claustrophobia has gotten worse to the point that, I felt like I was shrinking during an MRI & I panicked, My head started getting smaller. I drive my disabled daughter to school 23 miles away. I just look straight ahead & pray. I wear compression sleeves from the swelling of my wrists/forearms, which was caused by banging my arms on the steering wheel, then literally falling onto the steering wheel in the 2nd accident. I'm just frustrated, tired, in pain, scared & disappointed. I'm sorry you are in pain!
@jahling you truly have an unbelievable amount of pain you must deal with and I cannot even begin to know how you manage day to day. I hope something happens soon to alleviate your pain. No one should have to deal with so much pain for as much as the healthcare system is paid and touted as world class. My heart goes out to you.
So sorry you are going through so much.
I do suffer from multiple sources of pain in my body.
My only suggestion is to learn to meditate. It has helped me more than I thought possible. While the pain is still there my mind controls it better than the meds I take.
Hello, I was also taking the same medications for both of the same diseases & others. My doctor prescribed me 1800 MG of Gabapentin, which I thought was ridiculous. I also take Tramadol, 200MG, which only takes some of my pain away. I first started having problems after being rear-ended by a truck in 2008. I was diagnosed with Fibromyalgia. Since then, I was side-impacted by a Ford super-duty truck, then rear-ended while I was parked 10 months later. I also have SLE/Lupus, Sjogrens, Cervical/Lumbar Herniated discs, Pinched nerve/w no reflex in my right arm, DDD, Carpal Tunnel Chronic Pain Syndrome, Carpal Tunnel, Chronic Tendonitis since my accident in wrist/forearm/elbow. Cervical torn ligaments in both accidents, completely torn ligament in the left ankle, my legs swell to the point that I can't walk, Small Fiber Neuropathy, Peripheral Neuropathy, Dry Eye Syndrome, Sciatica. My neck area started swelling after the 2nd accident, and my doctor thought I had tumors. He thought I had a Clavicular fossa mass. I had an ultrasound done, Myositis. Lumps form on my chest since my second accident. No one could tell me what they were! They are muscle spasms. When I turn my neck just a little bit, my clavicular area swells into huge mountains. My neck started getting stuck. Tendons started protruding from my neck during spasms. When my Trapezius and Latissimus Dorsi spasms, I have trouble breathing. I have more problems than I can remember & it's not because I don't take care of myself, it's because of car accidents. The only good thing is, that both drivers admitted fault & their insurance paid to have my car fixed. I get Botox injections every 3 months since my second accident. My pain management doctor doesn't care. I take Tizanidine muscle relaxer, which gives me minimal relief. I literally fall out of bed every day because I'm in so much pain & so fatigued. I also have Hyperparathyroidism. The spasms had my pulse up to 121, my BP elevated, which is bad for my organs, and constant inflammation in my body from the Lupus. I always turned down medication, but I'm 52, in pain 24 hours a day & I feel like I'm going crazy. I'm still in disbelief of all the extra problems that I have since the accidents, especially the last one. My claustrophobia has gotten worse to the point that, I felt like I was shrinking during an MRI & I panicked, My head started getting smaller. I drive my disabled daughter to school 23 miles away. I just look straight ahead & pray. I wear compression sleeves from the swelling of my wrists/forearms, which was caused by banging my arms on the steering wheel, then literally falling onto the steering wheel in the 2nd accident. I'm just frustrated, tired, in pain, scared & disappointed. I'm sorry you are in pain!
Hello @jahling, welcome to Connect. I'm glad you've joined the conversation and hope you find comfort here. Living with your obstacles and challenges is no small feat. I'm sorry for all you've gone through, you obviously are exhausted, frustrated and scared.
You've provided quite a detailed list of diagnoses, medications and symptoms. I can tell it consumes you. I'm not a doctor, and have not been through exactly what you have, but I've had my share of challenges and you sound a bit like I did once...lost in health problems that have caused you to lose your identity, confused, overwhelmed, physically deconditioned and emotionally distraught.
It makes me very sad to read your statement about driving your daughter to school. You don't sound confident. What can I do to help? Maybe it helps to just vomit it all up, get it out, and be heard, or are you hoping to find some guidance or answers, along with support?
PS: I'm 52 also! We have a lot of good life to live still, just have to figure out how.
@jvivian Sorry for your situation Pain is very difficult and when mine is at its worst I can not do anything.<br />
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You can check with right to die groups, but first you need to write to your elected officials to tell them what is happening. This could help U as well as all the rest of us. <br />
<br />
In the news I have already read of many deaths due to the new policy of no opioids. These were from people cut off by official sources who went on the black market and got bad pain medicine that killed them. <br />
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The best thing is to go to another town or state and seek help. Also talk to pain doctor about hospice or the use of another non narcotic drug used to help additics come off opioids. This can also help with pain I am told. Called methadone or something else can’t think of the name right now.<br />
<br />
One person I talked to told me it helped her with her pain, but her doctors did not tell her about it right away because they did not make as much money from it.<br />
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If all else fails there are end of life groups on the internet. Most do not want this, but it may become the real way if they do not do something about the pain.<br />
<br />
One article on Oregon law say that many who are eligible get the end of life pills then never use them. Just knowing they are there and they can take them immediately if the pain get to bad helps them get through until nature (God) take them naturally.<br />
<br />
I can give you more info if you can contact me on my web site, but the controller here will not let me put it on here. If allowed I can give you information on end of life and I will try to find the name of medicine this other person told me that helped her. Good Luck. 19lin<br />
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Hi...my name is Jill!! I have suffered from chronic pain from my late teens on!! Its always been my back and limbs! I never participated in gym class but I attended and passed the written tests so. They couldn't fail me...class of '83! Things didn't get really bad until after '02 and the motorcycle accident!! People, I saw the light!!! Anyway, after that I was diagnosed with a whole slew of things that just meant PAIN to me ie: Torsion Dystonia, Scapulacostal Syndrome, Fibromyalgia, Lipedema, Lymphedema, Tremors, Peripheral Neuropathy, Morbid Obesity, Kidney Problems, Steatosis of the Liver, countless "abcesses" in the groin and inner thigh area. An encapulated lipoma on the top of my right foot, not to mention the little to medium to large lumps by the 100's all over my body that burn and flare off my nerves!! It hurts so much that it is unexplainable! I've been researching and believe it is called Dercum's Disease! What a horrible way to live! I would really love some feedback and some insight as to what Mayo Clinic can do for the pain. I cannot find anyone that knows what I'm talking about. One Doctor gave me a diagnosis of "signs and symptoms of dercums disease" but in his words he says "I don't diagnose Dercums Disease, I only treat it". Some people have lumps removed. What I have removed the call "cysts"! But, on my foot is a mass, an "encapulated lipoma"....HELP!!!
THANK YOU
JILL
@notmoff Yes it is worth exploring .Ask your Dr and Medicare pays for it .I go to shop at Walgreens My large load from Amazon.
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1 ReactionHello, I was also taking the same medications for both of the same diseases & others. My doctor prescribed me 1800 MG of Gabapentin, which I thought was ridiculous. I also take Tramadol, 200MG, which only takes some of my pain away. I first started having problems after being rear-ended by a truck in 2008. I was diagnosed with Fibromyalgia. Since then, I was side-impacted by a Ford super-duty truck, then rear-ended while I was parked 10 months later. I also have SLE/Lupus, Sjogrens, Cervical/Lumbar Herniated discs, Pinched nerve/w no reflex in my right arm, DDD, Carpal Tunnel Chronic Pain Syndrome, Carpal Tunnel, Chronic Tendonitis since my accident in wrist/forearm/elbow. Cervical torn ligaments in both accidents, completely torn ligament in the left ankle, my legs swell to the point that I can't walk, Small Fiber Neuropathy, Peripheral Neuropathy, Dry Eye Syndrome, Sciatica. My neck area started swelling after the 2nd accident, and my doctor thought I had tumors. He thought I had a Clavicular fossa mass. I had an ultrasound done, Myositis. Lumps form on my chest since my second accident. No one could tell me what they were! They are muscle spasms. When I turn my neck just a little bit, my clavicular area swells into huge mountains. My neck started getting stuck. Tendons started protruding from my neck during spasms. When my Trapezius and Latissimus Dorsi spasms, I have trouble breathing. I have more problems than I can remember & it's not because I don't take care of myself, it's because of car accidents. The only good thing is, that both drivers admitted fault & their insurance paid to have my car fixed. I get Botox injections every 3 months since my second accident. My pain management doctor doesn't care. I take Tizanidine muscle relaxer, which gives me minimal relief. I literally fall out of bed every day because I'm in so much pain & so fatigued. I also have Hyperparathyroidism. The spasms had my pulse up to 121, my BP elevated, which is bad for my organs, and constant inflammation in my body from the Lupus. I always turned down medication, but I'm 52, in pain 24 hours a day & I feel like I'm going crazy. I'm still in disbelief of all the extra problems that I have since the accidents, especially the last one. My claustrophobia has gotten worse to the point that, I felt like I was shrinking during an MRI & I panicked, My head started getting smaller. I drive my disabled daughter to school 23 miles away. I just look straight ahead & pray. I wear compression sleeves from the swelling of my wrists/forearms, which was caused by banging my arms on the steering wheel, then literally falling onto the steering wheel in the 2nd accident. I'm just frustrated, tired, in pain, scared & disappointed. I'm sorry you are in pain!
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2 Reactions@jahling you truly have an unbelievable amount of pain you must deal with and I cannot even begin to know how you manage day to day. I hope something happens soon to alleviate your pain. No one should have to deal with so much pain for as much as the healthcare system is paid and touted as world class. My heart goes out to you.
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2 ReactionsSo sorry you are going through so much.
I do suffer from multiple sources of pain in my body.
My only suggestion is to learn to meditate. It has helped me more than I thought possible. While the pain is still there my mind controls it better than the meds I take.
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3 ReactionsHello @jahling, welcome to Connect. I'm glad you've joined the conversation and hope you find comfort here. Living with your obstacles and challenges is no small feat. I'm sorry for all you've gone through, you obviously are exhausted, frustrated and scared.
You've provided quite a detailed list of diagnoses, medications and symptoms. I can tell it consumes you. I'm not a doctor, and have not been through exactly what you have, but I've had my share of challenges and you sound a bit like I did once...lost in health problems that have caused you to lose your identity, confused, overwhelmed, physically deconditioned and emotionally distraught.
It makes me very sad to read your statement about driving your daughter to school. You don't sound confident. What can I do to help? Maybe it helps to just vomit it all up, get it out, and be heard, or are you hoping to find some guidance or answers, along with support?
PS: I'm 52 also! We have a lot of good life to live still, just have to figure out how.
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4 Reactionshttps://en.wikipedia.org/wiki/Buprenorphine — “THIS?????”
Hello @jpresti1. I wanted to let you know that your reply to @jvivian may go unanswered as their last post was in 2016.
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2 Reactions