Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
I will be 50 in July, I am (or was) a very active woman, married to a great man, we loved to go fishing, camping and traveling. We have 6 grown children between the two of us, with 15 grandchildren and one on the way. We love to have family get togethers outdoor swimming parties and barbecues. One of my favorite hobbies is gardening vegetable and flowers, I love the outdoors.
My whole life has changed, in November I woke up one morning and the front of my thighs were hurting pretty badly. I went fishing with my husband on the Saturday and shopping with my daughter in law, but I was in pain all day. My legs just progressed in pain. Within a week the pain did not subside so I went to the doctor. My regular MD was not in, I saw somebody else she did some blood work and said she thought everything was okay to take tylenol and come back if it persist. It not only persist it got worse and grew to the rest of the upper part of my legs, groin and pelvic. I return to my regular MD. He did more blood work and. X ray. He spoke of fibromyalgia or polymyalgia and referred me to a neurologist by this point the pain has went to the upper part of my arms. The neurologist basically agreed with the MD's diagnosis of possible fibromyalgia or polymyalgia and also recommended I see a Rheumatologist which was the next step my MD also recommended.
This was in early December and the first rheumatologist appointment I could get around here even with a referral was mid February. My pain was steady increasing my whole way of life was changing, I could barely get in and out of bed or the couch without my husband helping. when I was laying down I could hardly move, my husband has to help me get dressed in the morning. The pain was bad! I called the rheumatologist office and beg to be seen sooner they put me on their list for cancellation in case somebody called in and cancelled. A couple of weeks went by I had not heard from . then i really got scared, weakness joined my pain, i had no strength in my legs or arms. On January 25th I called crying my pain was so severe begging to them to please get me in to see the doctor and explained the weakness that had begun. They call back later that day there was a cancellation I went in they did blood work the following Monday I got a call the blood work came back with no auto immune deficiency showing to go to the hospital and do xrays I went that day and did x rays. A week pass I did not hear anything from them. I called yesterday to find out they're closed until next week.
The rheumatologist had given me a shot of some kind of cortisone when I originally went in on the 25th of January it did not do any good. Before that my family MD tried me on 4 medications, 1 may be unable to think, I do still work a full time job, I cannot have my brain incompacitated. Another med made me sick as if I would have had the flu, the third did absolutely nothing. The only thing I still take is tremadol / ultram which I try not to take too much of I do not want a dependency on drugs. My husband has brought me massage units, TENS unit, heating pad, lotions, bath solutions.
The one time I saw the rheumatologist she did mention polymyositis. Honestly I had never heard of this before I continue to read and do research and all of my symptoms fall under polymyositis.
I have completely lost my quality of life, I am in a lot of pain, and this weakness has me very scared that I may end up crippled. It is very frustrating to have had this continue bar close to 3 months to see three doctors wish to our specialist and in all due honesty feel like they just are not taking this serious. Not a day goes by that I do not hurt, not a day goes by that I can live my life like I used to live.
My whole life has changed, in November I woke up one morning and the front of my thighs were hurting pretty badly. I went fishing with my husband on the Saturday and shopping with my daughter in law, but I was in pain all day. My legs just progressed in pain. Within a week the pain did not subside so I went to the doctor. My regular MD was not in, I saw somebody else she did some blood work and said she thought everything was okay to take tylenol and come back if it persist. It not only persist it got worse and grew to the rest of the upper part of my legs, groin and pelvic. I return to my regular MD. He did more blood work and. X ray. He spoke of fibromyalgia or polymyalgia and referred me to a neurologist by this point the pain has went to the upper part of my arms. The neurologist basically agreed with the MD's diagnosis of possible fibromyalgia or polymyalgia and also recommended I see a Rheumatologist which was the next step my MD also recommended.
This was in early December and the first rheumatologist appointment I could get around here even with a referral was mid February. My pain was steady increasing my whole way of life was changing, I could barely get in and out of bed or the couch without my husband helping. when I was laying down I could hardly move, my husband has to help me get dressed in the morning. The pain was bad! I called the rheumatologist office and beg to be seen sooner they put me on their list for cancellation in case somebody called in and cancelled. A couple of weeks went by I had not heard from . then i really got scared, weakness joined my pain, i had no strength in my legs or arms. On January 25th I called crying my pain was so severe begging to them to please get me in to see the doctor and explained the weakness that had begun. They call back later that day there was a cancellation I went in they did blood work the following Monday I got a call the blood work came back with no auto immune deficiency showing to go to the hospital and do xrays I went that day and did x rays. A week pass I did not hear anything from them. I called yesterday to find out they're closed until next week.
The rheumatologist had given me a shot of some kind of cortisone when I originally went in on the 25th of January it did not do any good. Before that my family MD tried me on 4 medications, 1 may be unable to think, I do still work a full time job, I cannot have my brain incompacitated. Another med made me sick as if I would have had the flu, the third did absolutely nothing. The only thing I still take is tremadol / ultram which I try not to take too much of I do not want a dependency on drugs. My husband has brought me massage units, TENS unit, heating pad, lotions, bath solutions.
The one time I saw the rheumatologist she did mention polymyositis. Honestly I had never heard of this before I continue to read and do research and all of my symptoms fall under polymyositis.
I have completely lost my quality of life, I am in a lot of pain, and this weakness has me very scared that I may end up crippled. It is very frustrating to have had this continue bar close to 3 months to see three doctors wish to our specialist and in all due honesty feel like they just are not taking this serious. Not a day goes by that I do not hurt, not a day goes by that I can live my life like I used to live.
In the meantime, keep a health log, listing your symptoms day by day and take it to each doctor. Also, if you notice any skin issues, take pictures for your doctors to see. Keep a food log of everything you consume each day. Sometimes this can show you a pattern between a certain food and a worsening of your symptoms. For instance, I am now gluten-free, avoid all artificial sweeteners and most refined sugar, and sometimes can't consume dairy or corn. Others have found a vegan diet to be helpful. In reading about myositis, some claim that environmental toxins can trigger flares. So I have eliminated many environmental toxins from my life. I clean mostly with baking soda, vinegar, and peroxide, and use a phosphate-free dishwasher detergent, as well as making my own deodorant.
Another thought---Many of us were deficient in vitamin D and other nutrients. So ask your doctor to check your vitamin and mineral levels. You should also avoid stress as much as possible. Poly- and dermatomyositis both involve inflammation, so avoid anything that you might know raises your inflammation. If doctors haven't checked your inflammatory markers, ask them to do so. Some of us have high ESR (sed rate), others battle CRP (C-reactive protein) or CK (Creatine kinase). Sorry for the length of my reply. Just trying to give you information. Best wishes for finding the answers you need. And please keep in contact with us here.
You can learn a lot from The Myositis Association. There are scholarly articles on Inclusion Body Myositis, DM & PM that can be found on the front home page of that website. The TMA also has a lot of helpful information.
Welcome to the group! We can relate to your difficulties too.
I think many of us have traveled the same path as you. It is important to actively pursue an answer and treatment. The sooner you treat, the less severe your symptoms might become over time.
The standard treatment for Myositis is Prednisone (or similar steroid) immediately at a high dose over a longer period (several months at least) until you become stable. Then they add a steroid sparing medication and try to taper the steroid. Not everyone can eliminate the steroid permanently without a decline in health.
I can tell you I live with minimal daily pain I can't manage through relaxation. I did get off Prednisone but I take Methotrexate weekly to keep my disease at bay. I have some mobility issues that I have to deal with daily but I've learned to live with it. I also still work full time although I've adapted my job and now work from home full time and quit traveling for work (I used to travel 30-40% of my time).
I had the Myositis antibody panel done and it all came back normal. I have a raised CK without Methotrexate. And my EMG shows abnormal muscle activity. Based on those things and my pattern of weakness, they decided I have PM and IBM overlap. I went to Johns Hopkins Myositis Center to fine tune my diagnosis and treatment.
There is life after diagnosis. There is treatment that will help you feel better. Find a doctor that can help you and educate yourself once your diagnosis is determined.
I never did think about the shot she gave me affecting future test that may be done in the next couple of weeks or so good thought.
My gyn did suggest to keep a log of things that I eat and come in contact with a couple of weeks ago when I saw her I really need to start doing that thanks for the suggestion / reminder.
The strangest thing is the doctor I am seeing now is who mentioned polymyositis from the beginning I had never heard of this. everything I have fits so perfectly physically but blood levels are not out of the box, when reading about polymyositis reading of any of you who have it I feel like it is me. There is nothing else that I have read that has so much of what I am experiencing. So it is evident the doctor knows what this is yet still does not seem to take it serious.
I am going to see her too find out what the x-rays look like an what the rest of my blood work was but I think I will make an appointment with another rheumatologist. When I did my paperwork there they give you a paper saying nobody can go in the room with you unless the person is a actual caregiver or if you have dementia or if you are in a wheelchair.
I do not like the concept. I have much trouble dressing and undressing Plus this is as you are I am sure know scary and I want my husband with me. Baton Rouge how many rheumatologist my husband and I have discussed I will make an appointment with one there it is about 2 hours from our house. So to answer the question yes I am from Louisiana. I will stay in touch and wish each of you the very best and thank you again.
Keep us posted. Know there is light at the end of the tunnel. And you will feel better.
I requested the blood work she has performed and MRI be sent to my family MD and the neurologist I saw early on.
I did question the nurse saying I am not a doctor but I read a lot and I am wondering disk issues with nerve damage usually have either leg or arm pain I have both, and usually occurs on one side, also none of my arm pain is pass my elbows and none of my leg pain is pass my knees. And my reflexes are fine, plus I have no tingling, numbness or shocking. So I just can't help but to question her diagnoses. The nurse said she would relay my questions and concerns. Never got a call back!
Also Monday was suppose to call me in a prescription for inflamation, CVS received it Thursday night, I called three times about it! Medicine does help a little, diclofenac bn voltaren.
I have made an appointment with a rheumatologist in baton Rouge.a two hr drive, one way but at this point what else am I to do.
I don't think I mentioned before last spring I had a virus I went to the doctor and urgent care 5 times, I couldn't kick it. Within a few weeks I had stomach pains that felt like labor pains. My husband had to bring me to the ER. After test and cat scan they said it was a bacteria from the virus that went into my lympth node in my lower stomach. In reading I have learned such virus are suspected to have something to do with polymyositis. Also with polymalgeria which my MD suspected that or fabro from the onset.
So my appt is march 10 and I will also ask my MD and neurologist their opinions after they get the results from the current doctor.
If it turns out to be a bulging disk only I think I'll be a very unusual case. AND now the last couple of weeKS my toungue seems to swe'll sometime, mostly at night. Don't know if there is a connection
DM could overlap with Myasthenia Gravis which is nerve issues. My neurologist checked me for MG and that fortunately was ruled out.
A chest x-ray DOES reveal an enlarged lung and heart. A simple inexpensive chest x-ray is a great start to know whether there is a further need to see a pulmonologist. I had a simple chest x-ray that found enlarged heart & lung. I was referred to the pulmonologist & cardiologist for further testing on pulmonary hypertension. Several months after my testing, the enlarged heart & lung returned to normal size. Fortunately, I did not need the meds for PH.
The beginning of DM can be scary, but many issues resolve over time with appropriate meds. Try to relax. Write down your many questions for the doctor. I always write down my questions for each appointment so I can leave the doctor knowing fully what to expect.
Keep us posted. Best Wishes.
She question about my blood work I told her I was informed there's no autoimmune deficiency. She questioned what else was I told???... She was just astound to find out I was told nothing else!!! Come to find out white blood count is up, two factors that associate with it is up, platelets are high, ANA is up & SED rate has increased.
So I went to the new rheumatologist in Baton Rouge yesterday he seems really great! He spent over an hour with me he had no problem with my husband being there. He spoke to both of us, answered all of my questions and gave us so much information. He had a lot of blood work done ,11 tubes to be exact, things he said "that were missed and should have been looked at". He did order a nerve conduction test and spoke about muscle biopsy after the blood work comes back. He wanted to be sure I was signed up with my Ochsner because he will directly reply through message as the blood results come in and give instructions, call in prescriptions and other testing depending on results.
He is leaning toward myositis. He also revealed that was his specialty in his studies.
I had been feeling pretty good for about 2 weeks, then I started hurting quite a bit. After the 2 hour ride there and back, half a day work yesterday morning, sitting in the office, 11 tubes of blood, plus the weather is horrible here (that seems to play a large factor in how I feel) .... well today my pain is so server I can hardly move!!
I do feel better having a doctor I feel cares and will find something out and help me.