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.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@kimi

Hi! It’s nice to read others comments on pain. I’ve lived with it for quite awhile but after aTKR last March and having complications and waking up from surgery with a drop foot. I received no help from Dr or explanation what happened. I did have previous laminectomy and finally a spinal fusion 3 years ago but only thing Dr said was you have bad back,neurosurgeon said back had nothing to do dropfoot. My pain is so bad it’s hard to wear shoes. When I try pain goes up in groin to back? Just recently had steroids shot but doesn’t last. I just wish I knew what happened and how to treat.

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Hello @kimi, and welcome to Connect. I had not heard of drop foot before, but is this information from Mayo Clinic what you are experiencing, https://www.mayoclinic.org/diseases-conditions/foot-drop/diagnosis-treatment/drc-20372633? You mentioned this happened after your knee replacement. If you don't mind sharing, how did your recovery from the knee replacement go, other than the foot?

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@jlfisher56

It is very hard dealing with the various types of pain. I have tried and use many modalities all the time. I have developed skin sensitivities from so many surgeries and use of medications/pain patches/TENS using various forms of tape. I rotate my pain sites and do use them but must be careful The sad state of affairs is the usage of narcotics and benzodiazepines. Just because there is misuse by illegal people, over prescribing, no other medication/modalities used, and these over zealous governors and law makers are putting all of us into one category, we chronic pain people that do need them will suffer. I do know after 24 years what works for me. I respect my medications as anyone with a disease (which chronic pain is) and use my medication plus other methods to try to have some life. Many years I had none! Learning to cope, space activities, having better days and sometimes very bad days i.e., we still don't live the "normal" lives of people our age. Waking up is a challenge. Exercises, TENS, medications, mediation, tapping modalities, pain patch i.e. sometimes a neck brace...just to start a day. Now the government wants to push anti-seizure drugs as if they have no serious side effect and they do. One has to do their own and be your best spokesman for yourself. Many doctors know little and even less about chronic pain. Narcotics in a certain group of chronic patients do work. JAMA and the Journal of Pain Medicine (Dec 2017)has the studies and doctors are writing guidelines to the CDC and Medical Societies to State governments. Also, doctors are trying to enlighten them about people like us that are not abusers but suffers that have and are trying everything. I am looking for a new pain doctor because mine is closing his practise. All the new constraints in the changing laws for some medications due to my complex and extensive health issues make it extremely difficult! In my state, most doctors instead of taking the newly, required special courses in order to be able to RX some narcotics, are closing up practice. Even the benzodiazepines are included and this effects people not only with muscle spasms but with anxiety. As a former (RN Educator) health care provider in the medical field, I do lots of research to find answers to try and improve my health. I thought the dark ages of treating chronic pain was over but it is getting worse. I had a young doctor tell me what "my"pain was (subjective) and caused by my narcotic without checking my back (with my street cloths on). My neck is deviated to the left with my cervical fusion (dystonia) and I have at least various sizes of 20 knots in my back mostly in the lumbar and cervical fusion sites which he didn't feel. My chiropractor was floored. He has been working to separate these muscles that are on top of muscles to help them regrow and function for once as normal. I feel sadness reading stories of pain people because it reminds me when I first started years ago on my journey, before so many complications, wondering why certains symptoms occurred and how do I try to improve my function making my body better? Pray everyone gets good help and hope I can help someone.

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@parus, I can relate to the negative thinking making pain worse. I have noticed that if I let myself dwell on my pain, it will indeed be worse, but more importantly, one bad day can turn in to two, then a week and so on. Exercise is also my way of dealing with pain, if only for the mental aspect of getting my blood flowing and body moving. I prefer muscle soreness that I created on purpose to joint pain any day!

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@virtuous69

Victorious69 Hello group. Not been on Mayo Connect for some time, but I want to start a discussion on this year's flu shot. Not sure which group I should pop into. I know that no one is to give medical advise as to whether or not to get this years flu shot. I never get a flu shot, because I have Fibromyalgia and my body would attempt to attack my body overkill. I'm just asking your personal experience and how you came by your decision OK?
The CDC and the media are making a massive plea to get flu shots while there is still time. Death tolls are rising, and this is a particularly dangerous strain. I research and this is what I know and why I;m asking your experience: My husband and I are flying sometime in February (peak season for the flu) a one hour flight with friends from San Jose to North Los Vegas. . I also know that some componets like mercury may stay in your body and some vaccines do not contain any mercury. The deaths of two healthy victims in California got the flu shot and died anyway. CDC says only vaccine is only 30 percent down to maybe 10 percent effective against the 3 strains H1N1 and others and may help to make the influenza less dangerous. Being on a plane load of people and virus germs that can live forever on the back of the plane seat cushions, leaves me feeling not very brave.
I am 70 years old this month, have Fibromyalgia, CSF( Epstein Barr) among other ailments. I choose not to get the flu shot as I have believed it would cause my overactive immune system to do just that: overreact. My doctor leaves the decision up to me.
Some neighbors and friends did get the flu shot and got very sick anyway. One couple flew by plane to India over Christmas vacation 16+ hours in not the best circulated air on plane.Husband got the flu shot and got very sick anyway going to India. And got it again flying back. The wife did not take the flu shot and did not get the flu from her husband, Normally I would not be concerned: I am prone to bronchitis every other year or so and take an inhaler for ashma during allergy season. Cough continues for 3 months. I only got two bad flus: in my life:, the Spanish Flu,and the swine flu. Thought I would never stop throwing up. CDC now says that breath molecules can travel through the air just by breathing:not even propelled by a cough or sneeze. Ain;t that encouraging. 🙁
So what has been your expererince so far and how you came by your decision.? I will probably wear a mask on the plane and at the casino where we'll go to have a special dinner .for my birthday. Sorry question is so long..........

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Thanks, @colleenyoung

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@kimi

Hi! It’s nice to read others comments on pain. I’ve lived with it for quite awhile but after aTKR last March and having complications and waking up from surgery with a drop foot. I received no help from Dr or explanation what happened. I did have previous laminectomy and finally a spinal fusion 3 years ago but only thing Dr said was you have bad back,neurosurgeon said back had nothing to do dropfoot. My pain is so bad it’s hard to wear shoes. When I try pain goes up in groin to back? Just recently had steroids shot but doesn’t last. I just wish I knew what happened and how to treat.

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@kimi

Drop foot is one of the possible symptoms of neuropathy. I have to be careful to lift my feet going up stairs, or I catch my toe on the edge of the step. Same thing with carpet.

I have both small fiber and autonomic neuropathy. I'm still learning what that means. I started having numbness and pins and needles in my feet, up to my calves, but then the burning pain started a few years ago. Peripheral neuropathy is a complicated disease.

It sounds like you may have more than one thing going on. I hope you can talk with a good neurologist.

There are some discussions in the neuropathy group that might be helpful.

Jim

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@jmhd, Thank for the info...I have just started having trouble with the foot issues you mention. Sometimes I have to stay in bed for about 45 minutes until all of the morning pain leaves my legs and they feel sturdy enough for me to get up and walk. I would love to hear about any help others have found.

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@colleenyoung

Hi all,
I'm Colleen, Community Director and part of Connect's moderator team along with Kelsey. I want to say a special thank you to @leh09 @19lin @seanbeck @suebreen54 @mlemieux @ladyjane85 @lolomarie @zjandre @briansr @salena54 @sharonmay7 for all your contributions and making new members feel welcome.

Cheers to continued connecting on Connect.

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Hi content and well .... from what I understand the metal posts or bars that go downward from the knee and upward from the knee are longer when they do a revision. I'm not sure just why, but this really has worked for me. Only problem is my imbalance. I'm going to the Wellness Center through the hospital to get in better shape, and especially strengthen the muscles, ligaments, etc. in that knee. They're pretty weak after being "attacked" twice! Between that and the Klonopin I take, I can take a fall in a heartbeat, so I'm very careful about how and where I walk.
Maybe if you look up "revision knee surgery" you will find a better and more complete explanation. If you do, please let me know.
abby

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@artscaping

@jmhd, Thank for the info...I have just started having trouble with the foot issues you mention. Sometimes I have to stay in bed for about 45 minutes until all of the morning pain leaves my legs and they feel sturdy enough for me to get up and walk. I would love to hear about any help others have found.

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@artscaping

Do you have a diagnosis, Chris?

Jim

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So far.....chronic myofascial pain syndrome and idiopathic polyneuropathy following 13 orthopedic surgeries and some perfectly positioned titanium in shoulders, knees and cervical spine....fusion in lumbar spine. Makes it tough to even guess at what is going on. Am scheduled with a rheumatologist in February...also see a neurologist regularly. Just hanging in there!

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And I almost forgot....within the last year....skin test was positive for small fiber neuropathy.

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@virtuous69

Victorious69 Hello group. Not been on Mayo Connect for some time, but I want to start a discussion on this year's flu shot. Not sure which group I should pop into. I know that no one is to give medical advise as to whether or not to get this years flu shot. I never get a flu shot, because I have Fibromyalgia and my body would attempt to attack my body overkill. I'm just asking your personal experience and how you came by your decision OK?
The CDC and the media are making a massive plea to get flu shots while there is still time. Death tolls are rising, and this is a particularly dangerous strain. I research and this is what I know and why I;m asking your experience: My husband and I are flying sometime in February (peak season for the flu) a one hour flight with friends from San Jose to North Los Vegas. . I also know that some componets like mercury may stay in your body and some vaccines do not contain any mercury. The deaths of two healthy victims in California got the flu shot and died anyway. CDC says only vaccine is only 30 percent down to maybe 10 percent effective against the 3 strains H1N1 and others and may help to make the influenza less dangerous. Being on a plane load of people and virus germs that can live forever on the back of the plane seat cushions, leaves me feeling not very brave.
I am 70 years old this month, have Fibromyalgia, CSF( Epstein Barr) among other ailments. I choose not to get the flu shot as I have believed it would cause my overactive immune system to do just that: overreact. My doctor leaves the decision up to me.
Some neighbors and friends did get the flu shot and got very sick anyway. One couple flew by plane to India over Christmas vacation 16+ hours in not the best circulated air on plane.Husband got the flu shot and got very sick anyway going to India. And got it again flying back. The wife did not take the flu shot and did not get the flu from her husband, Normally I would not be concerned: I am prone to bronchitis every other year or so and take an inhaler for ashma during allergy season. Cough continues for 3 months. I only got two bad flus: in my life:, the Spanish Flu,and the swine flu. Thought I would never stop throwing up. CDC now says that breath molecules can travel through the air just by breathing:not even propelled by a cough or sneeze. Ain;t that encouraging. 🙁
So what has been your expererince so far and how you came by your decision.? I will probably wear a mask on the plane and at the casino where we'll go to have a special dinner .for my birthday. Sorry question is so long..........

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i thank you. good information.

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