A few months ago I had a muscle biopsy surgery to address some pretty severe pain I was routinely having in my limbs. In this post I want to talk a little more about my journey that took place before and after the surgery.
So this whole process actually started a few years ago. I was having bizarre symptoms that differed from those of my classic autoimmune and dysautonomia. My whole body felt very shut down. When I ate I would get extremely tired or even pass out, but most noticeably, anytime I was upright I would get stabbing and throbbing pains throughout my legs. Eventully, it was decided that I would have a muscle biopsy on my upper left thigh.
This was my most invasive test to date and I was praying that it showed some abnormalities so everything done up until then would be worth it. The morning of the surgery I felt super nauseous and was really anxious about being put under while feeling ill to begin with. I checked in, got set up, was given a heated blanket to pull over me while I waited and removed my contacts (because no one told me you couldn’t wear contacts if you were being put under!).
Waking up from the first muscle biopsy surgery was not pleasant – I was extremely nauseous and had a very hard time getting up without fainting (due to my POTS).
Before the surgery, I remember the doctor specifically told me I should have only minimal pain, so afterwards I was very surprised at how painful it all was and how hard it was to put any pressure on that leg. I thought something had to be wrong until, at the follow up appointment, the same doctor then told me that’s something they just tell patients so they don’t panic heading into surgery. I was blown away by that response, and still feel it’s unethical to not tell the patient exactly what to expect so I could properly prepare myself. We got the results a few weeks later, they found nothing, and I was completely crushed.
A couple of years passed, and the pain and symptoms increased. It was getting so bad that I was in tears by the end of everyday and would dread when there was something I had to do that would keep me on my feet for any extended period of time. Most people in my life did not have any idea this was going on, but the pain was 100% consuming my life and I did not have the energy to care about much else. The lack of diagnosis was making me crazy. The intense pain seemed to have no source and my biggest fear that I would have this lifelong mystery that would never be answered.
Then something pretty amazing happened. My rheumatologist presented my case at an International Arthritis Convention and a German doctor who was attending the event thought he knew what was wrong. He said I needed to have another muscle biopsy, but this time, I needed an MRI of my thigh first, to determine the exact location to cut, rather than going in blind. He believed it was a rare type of muscle myositis that didn’t present equally in all parts of the muscles, meaning it could be missed if the biopsy was done in the wrong location.
I got the MRI and it was determined they would take a cube of muscle out directly parallel to my last incision. The morning of this surgery I went in with a lot clearer idea of what to expect. I wore glasses, rubbed lavender oil over my chest and head to help relax my body, and told my anesthesiologist that the last time I woke up with severe nausea (he gave me a combo of meds so I woke up feeling much better).
Even though I had a billion questions rushing through my mind, the overwhelming feeling I had was relief that there was finally a concrete answer to what was going on with me.
I am on some pretty intense pills for the next few months to address this, but the feeling of finally being on a “road” and having correct treatment is a huge relief. The pain has been been subsiding and I am slowly starting to be able to do more and more. I will keep you updated on the progress over these next few months!
Wow! I’ve never heard of this. I have POTS as well and also experience some pretty intense limb pain that they’ve chalked up to ‘fibromyalgia’. Glad you got to the bottom of it!
Em & Kate says
Hi Amber – Thank you so much! It’s so wonderful to connect with another POTSIE 🙂
You recently started following me on Instagram. I’m Heidi @hopefromheidi I just had my first peek at your blog and love your positivity. I have dysautonomia as well. I love your "sticker" section so much btw. Take care my dears!
Em & Kate says
Hi Heidi! Our apologies for the late reply, but thank you SO much for your kind words & for following along 🙂
I recently had the muscle biopsy and awaiting my results to finally put a name to what is going on with me. I have weakness on my upper and lower parts of my body and I am using a cane to get around. It is very difficult to get around and being this way just gets me down to where no one can understand my pain and everything that is happening to me, but your story gives me hope that I will get back to normal again.
Em + Kate says
Aw thank you so much for that message! I totally understand about people not getting the constant pain, it can feel really isolating. Hang in there, the muscle biopsy was great because the results gave us a way to start treating it. Hope the same for you!
I just stumbled upon your post. I am having the same sort of symptoms in the top of my legs. Stabbing pains when I stand for long periods of time. Sometimes I have pain when sitting but it’s mostly when standing still. What was your diagnosis if you don’t mind me asking? Have you been able to do anything to help it? Are you still having issues? Thank you!
Em + Kate says
Hi, the biopsy confirmed a type of muscle myositis, which they think was probably an off shoot of my autoimmune problems. I’m still dealing with it but now take medication for it, and compression machine, compression garments, and certain exercises are helping it improve! Some days are higher pain days than others though.