Chronic pain and other joint issues: Looking for answers

Posted by fletch312 @fletch312, Jun 5, 2022

Hi I’m in Canada looking To come to mayo.

Pain in hand radiates up arm. Starts in hand. It feels like a throbbing and feels like she can feel blood throbbing.

Can bend joints in hand. Can bend wrist without pain.

When press on fingers lower part it hurts. Pain in palm of hand.

Vacuuming then pain from holding vacuum. Maybe vibration.

Scrubbing definitely makes it worse.
Hands dont tend to cramp
Definite stiffness. Always feel need. To stretch hands

Pain in feet and legs are different than in hands.

Calves get Charlie horse cramping that you can visibly see. Muscle spasms.

Calves always feel tight.

Bottom of feet cramp spasm in bottom of feet and toes will cramp sometimes.

Stiffness from knees down.
Stiffness in morning or periods of being still.

Legs can be triggered by the wrong movements.

Pain is symmetric and little swelling. Recently have had some swelling in the hands

Had these symptoms for 4/12years. Have had pain all the time but it has gone in cycles. This time it has stayed. Started with getting very sick and was put on antibiotics. Never been the same since.

No shooting pain

Swelling very infrequent

Knees stiff.

Grey area symptoms may be related

Chronic anemia
Brain fog
Fatigue in cycles with the pain
Fatigue then get headaches
Definite cognitive impairment
Brain does not work the way it used to.
Heart palpitations

Doctors have done a lot of tests and have come up with nothing.

Thanks for any input

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@sueinmn

Anne - I read your story hear, and am sorry you suffer from ongoing, unrelieved pain. You are absolutely right to say you do your own research - these might help. And just to be clear, Kratom is unregulated, so you might not know what exactly you are buying, and it too can be addicitve or lead to dependency.
Here is information from Mayo Clinics about Kratom:
https://www.mayoclinic.org/healthy-lifestyle/consumer-health/in-depth/kratom/art-20402171
And here is what Cleveland Clinic says about using Kratom to withdraw from other opioids:
https://health.clevelandclinic.org/what-is-kratom/
What have you found?
Sue

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My goal is to get off all meds for pain! One step at a time. Instead of being weened I was recently abruptly cut off opioid medication. That sent me into withdrawal and my pain skyrocketed. I’m doing okay with the withdrawal symptoms, but not the pain from back problems! I’m interested in some treatments because I’ve never had anything done for nerve compression, ddd, disks, spine, etc. My back is a mess. I don’t expect miracles but would like to see if minimally invasive options might help, to get me moving more right now. Then I want to start swim therapy.
I have an inversion table that helps a lot. I do meditation and light exercise, stretching, etc. I’m taking a tincture for withdrawal that’s been very helpful for muscle spasms. I’m pretty good with distractions and keeping my spirts up. I see a therapist and am being treated for depression. It’s been part of my ‘self care’ to practice gratitude daily! As I say on occasion, “life’s in session” and I know my attitude matters!
I’m very careful and do my homework before I try anything! There is so much out there that is dangerous and/or smoke and mirrors, not to mention expensive!
I’ll definitely read the information you provided! Thanks

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@anne4u

My goal is to get off all meds for pain! One step at a time. Instead of being weened I was recently abruptly cut off opioid medication. That sent me into withdrawal and my pain skyrocketed. I’m doing okay with the withdrawal symptoms, but not the pain from back problems! I’m interested in some treatments because I’ve never had anything done for nerve compression, ddd, disks, spine, etc. My back is a mess. I don’t expect miracles but would like to see if minimally invasive options might help, to get me moving more right now. Then I want to start swim therapy.
I have an inversion table that helps a lot. I do meditation and light exercise, stretching, etc. I’m taking a tincture for withdrawal that’s been very helpful for muscle spasms. I’m pretty good with distractions and keeping my spirts up. I see a therapist and am being treated for depression. It’s been part of my ‘self care’ to practice gratitude daily! As I say on occasion, “life’s in session” and I know my attitude matters!
I’m very careful and do my homework before I try anything! There is so much out there that is dangerous and/or smoke and mirrors, not to mention expensive!
I’ll definitely read the information you provided! Thanks

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Two things I recommend-
Therapy (PT) in a warm water pool. It has amazing results.
A book called “Managing Your Pain Before it Manages You”. Available on Amazon. Both have helped me tremendously. Good luck!

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I agree with p.t. in warm water ! I also recently started on cbd oil gummies. They are amazing for my pain and uplifted in my spirits. I differ from major depression and have had 3 back surgeries, 1neck surgery,have an artificial hip and born with connective tissue disorder called Ehlers Danlos. I have not taken one pain pill since started these. Doctor also put me on an antiinflammatory diet. My days have been much more productive and just an ache once in awhile. I have been on pain meds all my life. This is first time in 48 yrs I have been off them. Good luck to you ! Hope you find what works for you.

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@macrdo

I agree with p.t. in warm water ! I also recently started on cbd oil gummies. They are amazing for my pain and uplifted in my spirits. I differ from major depression and have had 3 back surgeries, 1neck surgery,have an artificial hip and born with connective tissue disorder called Ehlers Danlos. I have not taken one pain pill since started these. Doctor also put me on an antiinflammatory diet. My days have been much more productive and just an ache once in awhile. I have been on pain meds all my life. This is first time in 48 yrs I have been off them. Good luck to you ! Hope you find what works for you.

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Welcome @macrdo, I can't imagine how good that feels to be off your pain meds after 48 years of taking them. Thanks for sharing what has helped you. Do you mind sharing what you were looking for when you found Connect?

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@johnbishop

Welcome @macrdo, I can't imagine how good that feels to be off your pain meds after 48 years of taking them. Thanks for sharing what has helped you. Do you mind sharing what you were looking for when you found Connect?

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Support and know I'm not the only one out there who suffers with intense pain and major depression from it. Someone to talk to if having an extremely low or bad day. Hopefully help others with what I've learned and been through in my life.

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What medicines are you on ? Lots of medications can cause strange side effects.

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@macrdo

What medicines are you on ? Lots of medications can cause strange side effects.

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Hi @macrdo, I'm not sure if the question is specifically for me. I don't take any meds for chronic pain other than an ibuprofin once in awhile. My PMR is in remission now thankfully so the only meds I take are for blood pressure and BPH. You are right about strange side effects which is why we should do some research along with asking quetions of our doctors.

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@johnbishop

Hi @macrdo, I'm not sure if the question is specifically for me. I don't take any meds for chronic pain other than an ibuprofin once in awhile. My PMR is in remission now thankfully so the only meds I take are for blood pressure and BPH. You are right about strange side effects which is why we should do some research along with asking quetions of our doctors.

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Might try to find a geneticists. I have Ehlers Danlos. Had strange things happen to me all the time as a child and young adult that no doctors could explain. I am 56 years old and finally about 10 yrs ago I got properly diagnosed. Nothing they can do for me as in DNA. Best I can do is do my physical therapy regimen and eat good quality food. I can tell if I cheat also. I just started taking cbd oil gummies and have have excellent relief in my constant pain plus mood elevated which is a plus. Praying you find your answer so you can find a plan of what to do next.

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@macrdo

Might try to find a geneticists. I have Ehlers Danlos. Had strange things happen to me all the time as a child and young adult that no doctors could explain. I am 56 years old and finally about 10 yrs ago I got properly diagnosed. Nothing they can do for me as in DNA. Best I can do is do my physical therapy regimen and eat good quality food. I can tell if I cheat also. I just started taking cbd oil gummies and have have excellent relief in my constant pain plus mood elevated which is a plus. Praying you find your answer so you can find a plan of what to do next.

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@macrdo, interestingly Dr. Knight, an Ehlers Danlos specialist at Mayo Clinic recently posted this blog article that may interest you:
- Medical Marijuana – Does it work? https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/medical-marijuana-does-it-work/

If you’re interested in connecting with other EDS members, see this discussion:
- Ehlers Danlos Syndrome (EDS) & HSD, calling all types! https://connect.mayoclinic.org/discussion/edshsd-calling-all-types/

To find other EDS related discussions, enter Ehlers or EDS in the discussion search on this page: https://connect.mayoclinic.org/discussions/all/

I bet you have loads to offer members new to EDS.

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@colleenyoung

@macrdo, interestingly Dr. Knight, an Ehlers Danlos specialist at Mayo Clinic recently posted this blog article that may interest you:
- Medical Marijuana – Does it work? https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/medical-marijuana-does-it-work/

If you’re interested in connecting with other EDS members, see this discussion:
- Ehlers Danlos Syndrome (EDS) & HSD, calling all types! https://connect.mayoclinic.org/discussion/edshsd-calling-all-types/

To find other EDS related discussions, enter Ehlers or EDS in the discussion search on this page: https://connect.mayoclinic.org/discussions/all/

I bet you have loads to offer members new to EDS.

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It's been a trying time yes ma'am ! I used to smoke street marijuana and got tired of the thc effects to my mind. Since recently on cbd oil gummies I get the benefits that marijuana used to give me without the mind altering effects plus no down feelings after it wears off.

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