Extreme Muscle pain.

Posted by mylegshurt @mylegshurt, Nov 4, 2019

Hello. My name is Robert Fanucci. Here is my story. I am desperately looking for an answer.
I am a 61 year old male. I do have heart disease. I had a quad bypass in 2000. Since then, I have had 10 stents put in my heart. Here is a list of medications that I have been taking for many years.
Lunesta 3mg once daily Niaspan 1000mg daily Zetia 10mg daily Crestor 10mg daily Atenolol 50mg daily Plavix 75mg daily Aspirin 325 mg daily Flomax .8mg daily Isosorbide 60 mg twice daily Ranexa 1000 mg daily Entresto 24-26mg once daily Amlodipine Besylate 5mg daily..
Sometime around March of 2016 I came down with the flu, or something like that. It had me down for a couple of weeks. My family doctor gave me a Z pack and Prednisone. When I was feeling better, I went out shopping. While in the store, I crouched down to look at some wallets on the bottom shelf. When I went to stand up, I just rolled to the floor on my face. Thought I just lost my balance. I tried to get up, but my legs didn’t have the strength. It was like a switch was turned off to my legs. They just couldn’t respond. Finally, someone helped me to my feet. I stood there for a few minutes and was then able to walk out of the store to my car. When I got home, I told my wife about it, and showed her how I crouched down. When I went to stand up, boom, my face was in the floor again. She is not big enough to help get me up, so I waited for a while and was able to stand using the couch to help pull myself up. This problem persisted. I was hoping it would just go away. So, I went to my family doctor. He was perplexed and referred me to a neurologist. He wanted a brain MRI first. That came back clear. Next, he performed an EMG test on my legs. Passed with flying colors. Next, he sent me to a guy to check my hips and then my spine. Cat scan and spine MRI showed little. Hips were perfect. Spine showed some stenosis and arthritis. He didn’t think it was enough to cause any problems. Now, during this time, I began to feel pain in my shoulders. It felt like I had a sandbag on each side pushing me down. Then it was my upper arms. If I try to push a shopping cart, My arms immediately hurt. If I reach up to put dishes in the cabinet, they hurt and are useless until they recover. Next was my neck and jaws. I can only chew food so many times before I have to stop. Neuro then sent me to a Rheumatologist. He bet a years salary that it was a circulation problem. Sent me for an echo on my legs and to the vascular doc. He said circulation was fine. No problems. Rheumatologist sent me to pain management. They sent me to a chiropractor for 25 visits. During this time I went for 2 rounds of spine injections. I next went to Penn Medicine in Philadelphia. They gave me every test imaginable, including genetic testing. They had no answers for me. A friend talked me into going to The Chung Institute for some alternative treatment. He though it was being caused by all the scar tissue from my surgeries. I would go weekly for about 50 shots of novocaine along all the scars. The full length of my legs where they harvested the vein for my bypass, the zipper down my chest, all spots from scopes for hernia surgery, the burn on my back from a chest x-ray, and about 30 shots in my gums. The pain just keeps getting worse. It is also in my shoulders. It feels like someone is standing on them. My upper arms. And my face. I can only chew food for so long before my jaws cease.
Sometimes I can walk 10 feet before it hits. Sometimes I can go 30 feet. It takes 30 to 90 seconds to recover. I have tried several times to walk through it. Can’t be done. The more I walk, the worse it hurts until finally I just can’t move them. I need someone with fresh ideas.

Thank you

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I am sorry to hear about all you have been going through. I know that statins can cause muscle weakness but I am assuming that someone has considered the role of statins in your case. I would strongly urge you to seek an appointment at Mayo. You can self-refer or perhaps your family doctor can help. Mayo is in-network for many insurers and the cost of medical care at Mayo is very reasonable. I live in the Philadelphia suburbs and have been going to Mayo Clinic in Rochester for some issues with my spine. Best of luck to you.


@mylegshurt Welcome to Connect, Robert. I hope someone on here might be able to suggest something to you but your problem sounds so unusual that it is quite perplexing.
I agree with @bernese53 about going elsewhere, if not Mayo then a large medical center that is preferably a teaching hospital. There are numerous hospitals out there that might be able to help, the doctors at these large medical centers see so much more than your typical doctor does. I went a long time without a diagnosis and after finally getting a diagnosis I went 55 miles down the highway to Mass General for treatment. Mayo in MN is an excellent hospital, of course, rated number 1, but it is not practical for everyone to travel that far.
The US News and World Reports rankings are generally considered to be the "gold standard" of hospital ratings and I notice there is a hospital in Philadelphia there, and also of course Johns Hopkins in Baltimore. You mention having gone to a hospital in Philadelphia so I presume you live fairly close to there. Is the hospital you went to the hospital that is listed here?

I truly hope you can find an answer to your problem and I hope you will keep us up on your progress.

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