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.

@wsh66

Hi. I had 20 lymph nodes removed which lead to lymphedema. Now I must wrap toes to crotch 23 hours per day. If any of your pain is due to lymphedema I would first trey Gabapentin. If that works I'd try Lyrica which is similar but is more effective for some. Ten times the price. The other drug I find effective is Amitriptyline, which has many uses, pain, depression, sleep aid. I take it at night. Do you wrap?

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Why did you have the lymph nodes removed? Do you have Lymphoma? I cannot take Gabapentin. When I take it, I cannot walk. I also cannot take Amitriptyline. It gives me serious heart palpitations. Have you tried Cannabis?

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Hello, I am new to this group. I have chronic pain in my right knee after a failed total knee and subsequent total revision. I have been to pain mgt, had ablation with heat, ablation with cold, neither of which worked. Pain mgt seems to think taking CBD with THC is the answer and I do not find that it works for pain or help with trying to get sleep. I also have arthritis in both hips and my back. Another MD had prescribed Tramadol and I never take more than 2 a day as I do not want to be dependent on it. It takes the edge off a little. Has anyone else had problems after knee surgery and had luck with any tx or med. I also am on Gabapentin 300 mg hs and am trying osteopathic manipulation and acupuncture.

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@sharonalllen

SPASTISICITY IS A CONDITION WERE YOUR LEG MUSCLES(IN MY CASE) ARE SPASTIC ALL OF THE TIME AND CAN NOT MOVE, DIFFICULT TO MOVE. THAT IS THE BEST WAY FOR ME TO EXPLAIN IT, SINCE I AM NOT A DR. MY SPELLING WAS INCORRECT THE FIRST TIME. THIS
HELPS

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@JustinMcClanahan Thanks so much

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@maryann1753

Hello, I am new to this group. I have chronic pain in my right knee after a failed total knee and subsequent total revision. I have been to pain mgt, had ablation with heat, ablation with cold, neither of which worked. Pain mgt seems to think taking CBD with THC is the answer and I do not find that it works for pain or help with trying to get sleep. I also have arthritis in both hips and my back. Another MD had prescribed Tramadol and I never take more than 2 a day as I do not want to be dependent on it. It takes the edge off a little. Has anyone else had problems after knee surgery and had luck with any tx or med. I also am on Gabapentin 300 mg hs and am trying osteopathic manipulation and acupuncture.

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Wow you are trying them all. I wonder if any of these well trained doctors feel bad about giving the liteweight Tramadol. After all we Seniors are responsible for DRUGS getting out of control. Not the young drug users. Tomorrow i go to my primsry dr. I will line up my pills and ask which pills i can quit. Afterall, doctors are useless. They can give you the wrong drugs. Think about it

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@oregongirl

Wow you are trying them all. I wonder if any of these well trained doctors feel bad about giving the liteweight Tramadol. After all we Seniors are responsible for DRUGS getting out of control. Not the young drug users. Tomorrow i go to my primsry dr. I will line up my pills and ask which pills i can quit. Afterall, doctors are useless. They can give you the wrong drugs. Think about it

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Hi @oregongirl, Good for you for re-assessing with your primary doctor the medications you are on. It's good to review every few years as we age and our needs change. I heartily disagree with the statement "all doctors are useless" however. Similarly it is incorrect to say doctors hold all the answers. But together patients can work together with their doctors to be a good care team. And patients also have the right to get a second or even third opinion.

I'll be interested in hearing what you learn tomorrow and if you discover medications you no longer need to take. Good luck.

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@maryann1753

Hello, I am new to this group. I have chronic pain in my right knee after a failed total knee and subsequent total revision. I have been to pain mgt, had ablation with heat, ablation with cold, neither of which worked. Pain mgt seems to think taking CBD with THC is the answer and I do not find that it works for pain or help with trying to get sleep. I also have arthritis in both hips and my back. Another MD had prescribed Tramadol and I never take more than 2 a day as I do not want to be dependent on it. It takes the edge off a little. Has anyone else had problems after knee surgery and had luck with any tx or med. I also am on Gabapentin 300 mg hs and am trying osteopathic manipulation and acupuncture.

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In reply to@maryann1753
I have been very Lucky with replacements I had both knees and one hip replaced none gave me any type of problem at all. I am going to try CBD next, have the first ordered, but not until I researched it fir 2 or 3 days I think I am getting some good stuff. I never got any use out of Tramadol at all, it is not for nerve pain. I too have really bad sleep problems. I will not take Gabapentin after what I went through.
I wish you luck with the things you are trying.

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@colleenyoung

Hi @oregongirl, Good for you for re-assessing with your primary doctor the medications you are on. It's good to review every few years as we age and our needs change. I heartily disagree with the statement "all doctors are useless" however. Similarly it is incorrect to say doctors hold all the answers. But together patients can work together with their doctors to be a good care team. And patients also have the right to get a second or even third opinion.

I'll be interested in hearing what you learn tomorrow and if you discover medications you no longer need to take. Good luck.

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I spent ,one and a half yrd at the University hosp. Everytimr i saw a dr they not only made another appt for with them but also referring me to another Dr. Give me a break….never a clear diagnosis but pills pills pills. Keeping that money coming in….the best care i ever got was the ER. Until they saw all the drugs prescribed by drs. Thn because of that they put me back by druggies and i nearly died Do not trust one dr
Go someehere else and get second opinion.

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Also. Same univetsity diagnosed my son with a brain tumor They gave him up to 4 months to live. Then doctors opened his skull….they saeed his skull open….and there wad nothing wrong. Now my son wears a scar to prove their incomputence. Please be careful. A NAME doctor mskes mistakes. I love my son. Think about what that did to our family.

Liked by lioness

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@oregongirl

Also. Same univetsity diagnosed my son with a brain tumor They gave him up to 4 months to live. Then doctors opened his skull….they saeed his skull open….and there wad nothing wrong. Now my son wears a scar to prove their incomputence. Please be careful. A NAME doctor mskes mistakes. I love my son. Think about what that did to our family.

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@oregongirl So sorry to hear about your son Going through that.I pray he is fine now .Sorry for what you went through .No wonder your down on Dr,s .we sure have to do our homework on everything.

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Yes….i am furious. The doctor was told to br the best. Right… .ask quedtions. Dont forget it is your life st stake

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@bowhunt1969

Hi friends! My name is Allison and I was diagnosed with invasive lobular carcinoma in November of 2014. I had a bilateral mastectomy with reconstruction along with an axillary dissection. Then I had chemotherapy followed by 30 days of radiation. I also had my ovaries removed and I just recently had surgery to remove my neuromas in my chest wall. I’ve been in chronic pain on my chest wall since I had my mastectomy. No one knows what to do in order to help me find relief. I have tried everything from PT to acupuncture. Maybe someone out there has a similar situation or maybe someone can offer advice. I hope that no one else has to suffer like this if they have breast cancer. Surgeons need to change their techniques so they don’t cause so much nerve damage. Help!!

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Reply to @bowhunter1969

I agree about the nerve pain the Dr.s need to improve their techniques! I am still looking for things to help with my Spastiscity but one thing I am sure of, that is ; research,research, research, research!!!! If someone says try A go to utube, Google pros & cons. I find for every yes there are 2 nos,and for ever no there are 2 yeses, it all boils down to the answer is yours and yours alone. I truly believe that the real answer lies with stem cells and a lot of trials and research. Use only doctors at places like Mayo Clinic, Baylor Univ, Univ. of Texas, etc. Also I want to get involved with trails to see if they can help! Some day we will fine peace and relief. Also try Meditation.

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@Gray

Why did you have the lymph nodes removed? Do you have Lymphoma? I cannot take Gabapentin. When I take it, I cannot walk. I also cannot take Amitriptyline. It gives me serious heart palpitations. Have you tried Cannabis?

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I had my lymph nodes out due to cancer. The tumor was on my thigh and they figured it had spread to at least 2 or 3 so they took them all on my left side, mid torso and groin. I plan to go off lyrica to see how much good it's doing. If I need it back I'm going to try gabapentin, (Neurontin) as it is almost the same but 1/10th the cost. I'm being treated by a pain clinic and you have to sign a contract to not use anything they don't give you and no street drugs and in MN cannabis is still a street drug so I haven't tried it for pain. I have a pain pump in my abdomen which takes care of most pain and my body only has to cope with 3.74 mgs. of dilaudid a day while I enjoy the relief of 1122 mgs. of dilaudid a day. Sweet.

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@sharonalllen

Reply to @bowhunter1969

I agree about the nerve pain the Dr.s need to improve their techniques! I am still looking for things to help with my Spastiscity but one thing I am sure of, that is ; research,research, research, research!!!! If someone says try A go to utube, Google pros & cons. I find for every yes there are 2 nos,and for ever no there are 2 yeses, it all boils down to the answer is yours and yours alone. I truly believe that the real answer lies with stem cells and a lot of trials and research. Use only doctors at places like Mayo Clinic, Baylor Univ, Univ. of Texas, etc. Also I want to get involved with trails to see if they can help! Some day we will fine peace and relief. Also try Meditation.

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Thank you very much @gailsoph12

Liked by @sharon

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@briansr

It’s an honor to find a group of people that have been, and are still going
through, what we all face 24/7. I’m getting worse but a lot of this startup
group have alot more problems than myself. Let’s try to grow this group
into one large enough to let our “FRIENDS” in Washington know that we are
indeed human beings and could use some representatives in D.C. to open
their minds and hearts to the millions that suffer daily with very little
to look forward to. I want to write, a novel, book, articles to whoever we
can reach. I just need some ideas. Do you suppose there is a pain monthly
magazine. LOL briansr

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Your friends in Washington by and large don't give a damn about the situation in which we find ourselves. They have accepted the myth that people are being addicted to opioids by their doctors. They're ignoring the fact that most of these addicts got addicted cuz they use their pain drugs to get high. I've known a lot of addicts I've never met one that wouldn't have an excuse for why they were addicted other than themselves. You have to meet this problem on the ground where the battle is taking place. If your medical providers will not deal with your condition of pain and offer realistic Solutions then you have to keep demanding that they do that and if need be you have to take legal action. If someone is trying to take away your medicine, you have to tell them, you recognized that I had a problem with pain before this and you know that I still have a problem with pain, what do you intend to do about it? Don't let them Bake Off don't let them send you somewhere else. Put your foot down and demand.

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Good morning to everyone. I don't usually text but I need a little help. One of my many diagnoses is chronic pain but I also have the diagnosis of neuropathy, fibromyalgia and arthritis (i.e. constant pain). And even this is difficult because my fingers don't work the way my mind tells them to. My biggest concern is the triangle of doctors I see. Whenever a new issue occurs or old gets worse, I get on the ,what I call it,ologist merry go round. When I make it back to the first ologist I saw either nothing happens or more medicine. The symptoms have gotten so bad this year that I have had to stop working. And even though I try second opinions all they seem to do is disagree with the previous specialist in their field and refer me to another ologist. How do you cope with the emotional hurt, disappointment and embarrassment of the merry go round. As well as the financial crisis this causes just trying to get the question answered of: what's going on and will it get any worse? I sorry, I feel that I am whining but maybe someone can help with getting off this merry go round.

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