I am a 44 year old female, slightly overweight, but otherwise very healthy. This past September, I awoke to sore muscles in my upper arms and shoulders. By mid-October, I could not raise my arms to do my hair, dress myself, fold or iron clothes, etc.... Not long after that, the pain in my shoulders and arms intensified and I also had a terrible headache at the base of my head/neck. I generally felt terrible, but no fever that I know of. I wanted to sleep constantly. I went to my doctor, who put me on a steroid and muscle relaxant. Neither of these made any difference. Next, I went to an orthopedic doctor who suggested an MRI. The MRI did not show any problems in the nerves or neck. The pain continued to progress and by November the muscle pain moved to my legs. I began to have a difficult time getting up and down from a seated position and walking long distances and my ankles began to swell and are still swollen by the end of each day. By the first of December, my doctor recommended a rheumatologist. The rheumatologist ran numerous tests and the only thing abnormal was a high muscle enzyme. Lupus was ruled out at that time. He put me on a stronger steroid and no noticeable changes occured. In January, he sent me to a neurologist. The neurologist thought there were strong indicators of Fibromyalgia, but ordered a muscle biopsy to rule out some things. The muscle biopsy came back showing muscle fiber death. The doctor has ordered additional blood work. My entire body is still sore, but the up and down motion with my legs is the worst and yet my arms seem better. I have some little nodules that have become noticeable to me where my elbow bends and in my upper arm. The nodules under my upper right arm are becoming painful and burn. I have also had some scalp tingling this week. It is now April and they still don't really have a diagnosis. The only medication I have ever taken on a consistant basis is Toprol XL for high blood pressure. Has anyone ever had anything similar to this or have any ideas? I am desperate.
hi, have you ever been checked for myofascial pain disease? I was diagnosed last year and it truly is a grueling experience. I had been in pain for many years but just pushed the pain aside until everything in my body seemed to be going haywire. I am 31. I also have a rapid heart rate (tachycardia) which I take toprol for to slow it down. There is a lot of pain with this illness and also disfunction of the body too. Alot of doctors are not really familiar with this condition, so it can be fairly hard to get diagnosed sometimes. I was diagnosed by a rhematologist. I hope that this helps.
I am also looking into seeing if there is anything else wrong with me, like something that has caused this, so the quest goes on.-hahaha
Let us know how you are doing.
Thanks for your response! I checked on the internet for symptoms of Myofascial Pain Disease and it certainly does sound similar to what I am experiencing. They did see muscle fiber death in the biopsy. I wonder if that is typical of that disease, also. Is this a progressive disease? Have you found anything that works to help you cope and or keep it from progressing?
Again, I appreciate your help and any other advice you have. I am expecting further bloodwork results next week and will let you know what they say.
I go to a massage therapist and it does help some, but not as much as I thought that it would, so that is why I am thinking that I may have something else going on too.
The disease itself is chronic. From my understanding, the liquid fascia turns into gel and causes all sorts of troubles. Because the fascia surrounds every nerve, every organ, every cell in your body, trouble can come anywhere. You may want to try a licensed massage therapist and see if she can palpate any of your trigger points to see if you have any.
It certainly is miserable, isn't it? Keep me updated.
Also- did you have a high ANA level? Mine was 1:640 last year, two different times.
Sorry to hear your going all of this. I was diagnosed with Myositis(active inflammatory myopathy) by muscle biopsy a year ago, all my other tests were negative.
Your experience with how your symptoms progressed are like DITTO to what I feel! Mine too started with my shoulders and neck, an MRI was done on my neck showing "buldging" disks but no nerve involvement, so that wasnt causing my shoulder troubles. The pain in my shoulders and upper arms felt as though the muscle was being ripped off the bone.
Then like you, It progressed to my legs, particulaly my hip flexer muscles, where getting up from a chair proves to be difficult. Now the pain I suffered in my arms, are now in my legs, at the hip and quads like the quad muscle is being ripped off the bone, and they fatigue rather quickly! Im having another EMG/NCS done on the 24th to see what changes can be found.
I was once a very physical person. I Had a very physical job which I loved! Now, my life has changed pretty dramticaly. I had to sell my horse because I could no longer ride, or groom her. I have a very hard time simply throwing a ball back and forth to my son, but I force myself to do it until the pain is too intence.
Ive been out of work since June of last year and now filing for social security. NOT where I thought I'd be so suddenly, at 43! I didnt have any improvement being on prednisone either, not everyone responds to the steriod treatment. I'm still learning the "coping" skills at this point, but feel blessed non the less ,for the things I can STILL do! I sure hope you get some answers soon!
Take care, Stay strong,
and GOd bless,
P.S. I just did a quick search of side effects of Toprol, muscle pain, fatigue, as well as feet and ancle swelling can be side effects. It may be worth a shot to talk to your Doctor about possibly changing your Toprol to a different med, and see if there is any change in your symptoms? Just a thought, it may not take all the pain away, but may help relieve some of it?
Thanks for your post. I was just wondering if you also had a high ANA level, if it was ever checked? Also do you have any cardiac arrthymia (fast pulse, PVC, PAC,ect).
I know what you mean. I am 32, and I used to work 2 jobs and go to 2 different colleges at the same time. Now getting out of bed is a chore.
Are you on any medication for yours?
I still think that something else is going on with me because mine started so suddenly with a rapid heart rate, although I do have to admit that I had been in pain a number of years before that.
Keep us updated.
No my ANA was normal, as were all my other labs, including CK. I ended up going to a Major Medical facility for diagnosis. And even with all the negative testing they didnt give up. The muscle biopsy is a definative test for diagnosis. So I am greatful they went that extra mile to find the answers.
I was just diagnosed with "Sinus node dysfunction" with my heart. While in the hospital for lung surgery, my heart had a long "pause" twice. Also with "Bradycardia" which is slow heart rate. Im now having a "loop recorder" implanted on the 28th to monitor my heart so they can get more information before implanting a pacemaker. IT all seems to never end.
I have many adverce reactions to medications so I dont take any meds for the pain. The only med I take is Provigil for the extream fatigue that comes along with this wonderful disease.
I sure hope you get your answers soo.
Take care, GOd bless,
and stay strong.