Chronic pain and other joint issues: Looking for answers

Posted by fletch312 @fletch312, Jun 5 6:35pm

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

Interested in more discussions like this? Go to the Bones, Joints & Muscles group.

@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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ammaw52. Does a very stiff knee and hard to walk now mean scar tissue in my knee from tkr? Dr wants to do a manipulation on June 17 2022. Has anyone had any success with one?

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@ammaw52

ammaw52. Does a very stiff knee and hard to walk now mean scar tissue in my knee from tkr? Dr wants to do a manipulation on June 17 2022. Has anyone had any success with one?

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@ammaw52, I think scar tissue after a TKR can make the knee painful and stiff. There is another discussion on manipulation under anesthesia here — https://connect.mayoclinic.org/discussion/i-had-my-manipulation-under-anesthesia-yesterday/.

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@carolasc

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 do plan to start swim therapy. I’ve checked around and all the places that offer it have warm water pools. I’m seeing a new pain doctor who is helping me with withdrawal symptoms from stopping pain medication. He prescribed an anti-inflammatory which has helped tremendously with pain. I don’t plan to stay on it long but I need something right now to help get me moving. At my 1st appointment he sent me for updated x-rays of my neck to tail bone, my last one was 2 years old. I have nerve conduction studies and a nerve block scheduled. I know these procedures offer different results for different people, but I need something to aid in mobility and pain relief now. Then I’ll start therapy! A week after seeing him I’m already feeling better.
I have the book you mentioned, Managing Your Pain Before it Manages You. I was diagnosed with fibromyalgia in 2003 and got it shortly after. Good book! I know there is a 4th edition out, which I need to get!

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Hi, fletch 312,
I'm not even close to an expert, but a lot of your symptoms sound like you could be dealing with Polymyalgia Rheumatica. You might look it up on line and see what you think. You could be dealing with more than one disease, too. Has anyone checked your CRP and ESR for inflammation? Although, sometimes those tests come up empty, and that can throw the diagnosis off. You might ask your doctor to give you a perscription for prednisone for a week, and see if it helps you. If it doesn't, then it's not PMR.

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@sandysurf

I was accused of something I didn’t do from a pain management clinic over six months ago. I’ll defend myself until the day that I die that I didn’t do what he accused, and dismissed, me about.
I now have a torn meniscus and other ligaments behind my knee. The pain is so terrible, I can hardly do anything. My knee won’t bend backwards at all. It takes me forever to get dressed or do anything that requires my knee to bend, which is just about everything.
The orthopedic doctor ordered an MRI, which showed the tears.
Whatever the past pain management doctor put in his “notes”, has put me on a “list”. There’s NO doctor, including the orthopedic doctor, my new primary doctor, the new pain management clinic I was referred to by the ortho doctor, will give me anything for this acute, debilitating pain. I don’t go into their office’s asking for anything. I tell them how much pain I have playing that stupid number 1-10 game. I have asked during my appointment for something for pain. It’s always “no”.
I have no recourse. I don’t know what to do. I sit alone every day because walking any distance is not possible. I want to be “legal”, but they’re not letting me! My depression is slipping back because of this. This, and “his” inaccurate reason for dismissal. I was in such shock when he told me he was getting rid of me. I cry constantly. Most are tears of anger, the rest are tears of pain, and the inability to live the way I used to. This “list” will follow me forever, and I’m totally worn out because it’s the only thing that I can think about. There’s no reason to call an attorney, because it wasn’t medical malpractice. But, I’ve been “labeled”, and I don’t know what for.

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Dr.’s are scared of giving ANY pain meds, I can totally relate. I’ve self medicated b4… 20 some odd years ago. Then I found a neurologist who treated migraines …he helped me for years, then I was released as a patient. It was like being fired for no reason! I know how you feel. I wish I had advice other than surgery or a pain clinic… some of those are a little hinky, but I know people who go cuz of the same reason…no help from “normal” dr.’s

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I went to a new DR. after having the same one for 6 years who only believed in shots that don't work. That DR. did give me Hydrocodone which I've been on for 4 years at least, they don't do much for my pain. I have Osteoarthritis, Sciatica, Scoliosis, degenerative Disk Disease, and PAIN! The new DR. wants me off my Cholesterol med for 30 days & to stay on Hydrocodone, He wants to see if the cholesterol pill is causing pain. I'm really disappointed. Did he look at my x-rays and MRI's? I wonder. And I know my pain started before I went on
Rosuvastatin calcium 10mg. So now my cholesterol will go up and I am still in bad pain. Has anyone else had a DR. try this on them?

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