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Muscle inflammation, myositis

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#1 susie54


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Posted 05 September 2008 - 02:01 AM

Hi Everyone,

I had my thyroid surgery and the verdict was good. It was all benign. But with surgery comes a flare up. I have really had a time the past couple of weeks. I am experiencing malabsorption which I am treating, acid reflux is acting up so I have double reflux medicine for a while. Swallowing is a little worse lately and breathing a little short.
The worst of all of is the muscles everywhere and shooting pains especially in feet. If I even walk too much or lift too much, my muscles ache so bad. Feel like they are sick. I don't feel weakness. I have an appointment next Wednesday with rheumatologist but was wondering if this sounds like myositis? Susie54

#2 LisaBulman


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Posted 05 September 2008 - 02:17 AM

I am glad to hear the surgery went well but I feel horrible that you are deal with all of this other stuff after. You can find info here Myositis. It states Repeated blood tests for detection of muscle enzymes should be performed at your doctors discretion.

Please let us know what the dr says. Hopefully it is just something that will take care of itself soon.

Lisa Bulman
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#3 Cheryle


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Posted 05 September 2008 - 03:05 AM

Glad you had your surgery and that it was benign!! That must have been a relief.

Do you have weakness along with your pain? I have been having muscle pain, but no weakness. I still wonder if it could be myositis as I have a subset disease of polymyositis already. I have chatted with a young woman who has the same, pain yet no weakness and she has Dermatomyositis. So I see it is possible.

Hopefully with your appointment Wednesday, your doctor can shed some light on that for you.

Hope your reflux gets better!

#4 janey


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Posted 05 September 2008 - 05:36 AM

I'm thrilled that the results were benign and you can through the surgery o.k. Sorry that you are dealing with the after effects due to your suppressed immune system. It's just so hard to bounce back after something like this. Please take it easy and let your body heal at its own rate.

If you read the link that Lisa provided you'll see that myositis is another one of those connective tissue diseases that has various symptoms that can be different for everyone. I have polymyositis (PM) and have never really experienced much pain, but have had tremendous muscle weakness (between head and knees). The blood test that Lisa mentioned is the CPK or CK which measures muscle inflammation by measuring the amount of muscle enzymes in your blood. Please bring your pain and muscle fatigue up with your doctor. You never know what going on.

Take it easy, get plenty of rest and let someone else care for you as much as possible.

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#5 susie54


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Posted 05 September 2008 - 08:30 AM


I called the doctor and he ordered several tests including muscle enzymes and sed rate. Thanks Lisa for the links. I read them. Cheryl, sorry to hear of your trouble with muscles too. I have MCTD with lupus/sclero mix but never have been diagnosed with the polymyositis but it is certainly apart of mixed connective. I was interested that your friend with dermatosytis (these words are just too long, you know)had muscle pain too.
Janey, I know you have dealt with this for a long time. I had weakness feeling in hip and buttocks area and neck. I am still able to get up from a chair without trouble though. Anyway, we will see what comes of it. I hope nothing. I will let you all know. Susie54

#6 canon


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Posted 05 September 2008 - 03:09 PM

Hi Susie,

Wonderful news on the thyroid! I do not have myositis but understand your reaction to surgery. Surgery has always set off different things with me too, mostly joint inflamation. I have not had many surgeries and try to stay away from it as much as possible. Even the little surgeries set things off.

Wishing you a speedy recovery,

A happy heart is good medicine.

#7 Peggy


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Posted 06 September 2008 - 10:53 AM

Congrats on the good news. I can relate to what you are saying about the shooting nerve pain. I have Polymyositis, Mixed Connective Tissue Disorder and Peripheral Neuropathy. It started with swollen ankles; then my hands and feet tingled; then they went numb; now it has progressed up to my knees; then I would have these sharp pains where I felt like I was being stabbed from the inside out and never knew where they were going to hit. Now I have severe leg pain and joint pain. I wear a pain patch and take an oral pain medication in addition. This can be so very tiring. I did IVIG therapy for 3 months and it seemed to help. I haven't had a treatment since June and when I go in october it will be determined if they should continue or not and then convincing the insurance company that they should pay for it.

Having 6 different autoimmune diseases takes its toll. Each day is a struggle and when I have a good day I try to hit myself and remind myself that these are one of the "good" days and to enjoy!

Warm hugs,


#8 RememberingToSmile


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Posted 07 September 2008 - 09:03 AM

I am glad your doctor is looking at your blood markers.

I have myositis, and am constantly trying to find ways to distinguish the causes of muscle pain, discomfort, and weakness.... as well as shortness of breath and deconditioning. It is a challenge - for both me and the doctor, I think.

For me, myosits flare starts with trouble getting off the toilet seat, washing my hair and making it to the top of the stairs without sitting to catch my breath. It is pretty dramatic.

Also, there are specific spots on my lower rear that ache and the symptoms are on my hips, thighs, and upper arms only. If my forearms or calves are involved, I usually assume it's the scleroderma.

Glad to hear your biopsy results.


#9 susie54


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Posted 09 September 2008 - 02:03 AM


Good news, my muscle enzymes are fine. This is just vascular pain with my neuropathy. The pain caused weakness later but this involved the whole leg and arm. Shooting pain in body and bones. ANway, I am glad and going to my rheumatologist Wednesday and we will discuss what to do. I am also retaining alot of fluid. Just a good flare up. THanks for all your replies. SUsie54

#10 debonair susie

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Posted 09 September 2008 - 04:38 AM

Hi Susie,

I'm glad the results for both your surgery and the blood work tuned out well.
However, I sure can empathize with the horrible muscle pain you are experiencing since your surgery.

Ow, ow...vascular pain!
Feel better soon.....

Lovin' Hugs,
The "'nother one" Susie!
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