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Dermatomyositis

Dermatomyositis

Dermatomyositis (DM) is a connective-tissue disease related to polymyositis (PM) that is characterized by inflammation of the muscles and the skin. X-ray findings sometimes include dystrophic calcifications in the muscles, and patients may or may not notice small calcium deposits under the skin. Many do not have any calcium deposits of any kind. The rash also may come and go, and may not be dependent on the severity of the muscle involvement at the time. “Gottron’s papules”, pink patches on the knuckles, and priapism, are associated with this disorder.

Another concern is interstitial lung disease.

Definition – one of a group of muscle diseases that involve inflammation of the muscles or associated tissues; the inflammatory cells of the immune system attack the blood vessels that supply muscles and skin
Cause – the cause is unclear; researchers suspect viruses or exposure to certain drugs might trigger the misdirected immune response
Onset – childhood to adulthood
Symptoms – distinctive reddish or purplish rash; rough, scaly skin; hard, painful calcium nodules under the skin; weakness of the muscles of the hips, thighs, upper arms, top part of the back, shoulders and muscles that move the neck; possible heart, respiratory and swallowing problems; possible joint pain
Progression – gradual; immunosuppressant medications often effectively control symptoms
Inheritance – not a genetic disease, though a genetic predisposition may exist

 

Franks journey with Dermatomyositis

Symptoms

It was at the end of August in 2010 that I noticed that my ability to whistle a tune was diminishing, I gave no thought to it at that time but as september passed  and we entered October I was starting to have difficulty swallowing harder food stuff such as Meat, Bread, etc. I was also starting to have bouts of “Wind” and feeling bloated, I made an appointment with the doctor who said it was nothing to worry about and sent me away with a prescription for “Gaviscon” however the Swallowing got progressively worse and in November the doctor decided to send me for an “Endoscopy”. The outcome of this was that they diagnosed a “Twisted stomach” cup and spill stomach and prescribed Omeprazole  for “Acid Reflux” however although this helped with the Indigestion which in fact was “Acid Reflux’ it did not improve the swallowing and in January 2011 I was diagnosed by my doctor as having “Dysphagia” and referred to the hospital for a “Barium Swallow”.  at this time I had lost a lot of weight. The appointment was towards the end of February and  that was what I was waiting for.

On the day of the Barium Swallow I attended the Hospital and the doctors started the test within 10 minutes she stopped the test and said she could see what the problem, she could see a problem with the second swallow in the Esophagus  and that I would be given an appointment to see a Neurologist, and I was told to go home and my GP would be in touch. Within 2 hours of arriving home my GP contacted me and I was given an appointment with a Neurologist within 4 weeks, during the following week I was staying at my sons house when I was admitted to hospital with Breathing problems.

Diagnosis

In the hospital in Portsmouth UK I was seen by a Neurologist who looked at the rash on the back of my hand,s and ordered an EMG test, and I was also put on a Nasal feed tube as my weight had dropped from 13.5 stone to 8.5 stone. after a week at the QA Hospital in Portsmouth I was transferred to the Southampton Hospital where I had a Muscle Biopsy along with a Cat Scan, Pet Scan, Deep Body Scan, Heart Echo Scan and Pulmonary function Test. The diagnosis at that time was Dermatomyositis with Chronic Dysphagia. I was started on 60 mg of Prednisolone per day and stayed at Southampton for two weeks and then transferred back to QA Hospital at portsmouth. I was discharged back home on the 25th May 2011 and had a care package in place as I live on my own.

Back home

once back home I was visited by the District nurse , and had a Hospital profile bed installed and my family arranged the house so that I could live on the ground floor, as I could not climb the stairs, I also had limited mobility in my arms and could not lift my hand above my shoulders so I have a carer come in every morning to wash my face and neck, and comb my hair. I see a Dietician and a Speech therapist on a regular basis and when I came home from Hospital I was on a puree diet until November 2011 and am now on a Soft lumps diet. My Medication now is 10 mg Prednisolone a day and 15 mg Methotrexate a week on a friday, also folic acid and Calcium tablets and vitamin D. I still have some difficulty walking for more than 20 min,s before my leg muscles get tired and my arm mobility is much better but still need the carer in the morning. I am lucky in that I have a good  friends to take me shopping with the wheelchair and my family visit me weekly and I go to my sons twice a week, one problem I do have is that they have detected irregular heartbeats due to the heart muscles being weakened by the Myositis so have a Reveal heart monitor fitted, and i still suffer from Acid Reflux and take Lansoprazole for that.

My thoughts

I feel that I am lucky in as much as I did not get this disease until I was 67 years old and is probably one of the reasons that my muscles are still very weak, It took a long time to come to terms with the fact that I have to rely on Family and Friends to help me but I have now accepted that as a part of my new life for the foreseeable future. I think my sense of humour has helped a lot and I write my weekly blog journal with humour also I have a Myositis website which I hope will help people, so although I did not Visualize this for my retirement, I have to accept that it has happened and get on and enjoy retirement.

Can we be healed through prayer and faith

Dear Roly, regarding your article regarding faith Healing, I am a firm believer in it and I know I am here today aged 80 years. I am in remission from DM/PM and mixed connective tissue disease, which was DX in 1984. I was in the wilderness for many, many years on high does of prednisilone I could not tolerate Imuran due to kidney stones caused by the calcichew which was prescribed for my Osteoporosis I was housebound for 2 years, I could not walk but crawled on my hands and knees. My husband was told to take me to Spain, which he did on the plane I had a lady come to speak to me and she held my hand and wished me well, When we got to Malaga I was put in Wheel chair and taken to a friends villa a gentleman saw the struggle it was for me to be moved he came and spoke to my husband he told us that people came from all over the world to a clinic in the Costa del Sol and that the treatment was just being helped to be laid on the hot sand for an hour each day. It really worked for me after one week i was able to get to the beach with help and was able to walk upright. My Husband decided to buy an apartment in a hotel , slowly over time I got stronger but I used a very high factor Sun block, one day a lady came and sat on the end of my sun bed and she said i have been looking for you for years it was the Lady I had spoken to on my first trip to Spain She told me she was a faith healer and she wanted to help me I was a bit apprehensive, she was staying in the Hotel and asked my Husband to bring me to see her , it was an amazing experience as she without touching me knew i had kidney stones .also that i had a rare and very complicated disease. from that day I became a believer in faith healing, she did not live very far from me and she came to give me healing she would take no payment or even a gift but she brought me through so many illnesses associated to my condition. I am sorry i have gone on for so long but I wanted to tell you of my experience with faith healing. She would give me absent healing as well for many, many years she was my saviour sadly she had a long standing chest complaint and after catching a very bad cold turning to Pleurisy we lost her. But I still feel her presence around me. Like Fay she gave to me Faith. Her son also has the gift of healing and has premonitions and saved a dreadful event happening he is a racing driver. Roly if you would like to speak with me if you will send me an E.mail and your Phone number i would be happy to discuss this with you My very Best wishes Leila Niman {leila@leilaniman.net. I live in Manchester
Leila Niman wrote7 hours ago

I omitted to tell you that I am in full remission from the Dm/Pm and that was due to an amazing consultant who recognised my condition from blood test taken when I was admitted to hospital with renal failure and septicemia with only 20 mins to live. As my whole body was closing down after I caught E.Coli . I had had a visit from emergency NHS Dr who told me to keep drinking and taking my medication, but I was so poorly and my husband could not cope with having to carry me to the bathroom he called in a private Dr who arranged for me to be admitted to private hospital , The consultant had a special interest in Auto Immune diseases. I was in hospital for 17 days. He told me I did not have cancer but he would like to treat me with chemotherapy when I was stronger about 6 weeks later he admitted me for 2 days he gave me massive doses of Methyl prednisilone by infusion and then gave me CHYCLOPHOSIMIDE after the first infusion my itching stopped and it was repeated at monthly intervals and my skin cleared up and I had my life back that was in 2002, I omitted to mention that In 2000 I had complete heart block and was given a Pacemaker I was told by the cardiologist it was more than likely caused by the PM. I was able to go on a world cruise for our Golden Wedding, and it was my friend Elsie G_D rest her dear soul that gave me the confidence to undertake a 93 day world cruise. We had the bonus of visiting South Africa Cape Town , Durban and Mombassa and the best of all was eventually getting to Sydney OZ were my brother lives it was a amazing journey we had 90 stops the only disability I am left with is wasted hip muscles which gives me difficulty with steps. So I am extremely lucky and I put it down to my faith healing experiences, last month I had my Pacemaker renewed, I was a bit apprehensive without Elsie but I knew she was with me in spirit. Best Wishes { Leila ] also known as LULU

Submitted by: Leila (Lulu) Niman 23-10-09

 

This was converted for DM

A Letter to Normals from a Person With Dermatomyositis ,DM and chronic pain

Having DM means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand: These are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me, stuck inside this body. I still worry about work, my family, my friends, and most of the time, I’d still like to hear you talk about yours, too.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. that’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!” I am merely coping. I am sounding happy and trying to look normal. If you want to
comment on that, you’re welcome.

Please understand that being able to stand/walk/concentrate up for ten minutes doesn’t necessarily mean that I can do it up for twenty minutes, or
an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please understand that dematomyositis is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying, “But you did it before!” or “Oh, come on, I know you can do this!” If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to “get my mind off of it”, may frustrate me to tears, and is not correct. if I was capable of doing some things any or all of the time, don’t you know that I would? I am working with my doctors and I am doing what I am supposed to do. Another statement that hurts is, “You just need to push yourself more, try harder”. Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down,lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can’t be put off or forgotten just because I’m somewhere, or I’m right in the middle of doing something. DM pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If
there were something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide
networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot.DM and Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you, people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, the cooking or the cleaning. I may need you to take me to the doctor, or to the store. You are my link to the “normalcy” of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just
as soon as I am able.

I know that I asked a lot from you, and I do thank you for
listening. It really does mean a lot.
Submitted by: Anonymous 27-10-09

 

7 responses to “Dermatomyositis

  1. chris

    September 19, 2014 at 4:23 pm

    I have the same condition and know what your saying try getting the esa to understand been deemed fit for work and I can hardly roll out of bed.can’t even dress my self

     
    • Anonymous

      November 16, 2014 at 2:12 am

      Iv had dm for a year now i have been on esa for a few nonths and now get disibility im 45 and was so fit im useless now and hate this so much 😦 i hope u sort ur esA regards lisa.

       
      • chris

        March 18, 2015 at 5:23 pm

        All sorted on the esa front finally,still feel like I’ve been beaten up every morning,scratching myself like a cat with fleas all the time no matter what medications I use .
        I was put on high doses of steroids and gradually weaned off them , l had real trouble walking and had mri scan on my hips ,now they say I need a double hip replacement because 15% deteration due to the steroids .
        I was a healthy hard working person a couple of years ago now I spend most of my time in bed suffering with chronic pain ,fatigue,and not forgetting the constant itching
        I also have the rash on my head and shoulders,arms it dosent do your confidence any good when you look like a swan vester match.I’m 42

         
  2. Nimisha

    December 22, 2014 at 10:26 am

    Hi, I am 29years old.. newly married and i have DM. things are getting worse with time… if 1 day am fine..the other 2 days i am sick…no day is predictable for me, i am never sure of how my mornings will be..just as you mentioned on how people ask you to be strong and push things, try new ways of working things out and fight it…it same happens here with me, and its getting very difficult as i live in an extended family with all having a different thinking.

    doctors have said 4 years minimum….for my struggle, or maybe longer.

    My family expect a lot from me, on work i should keep doing to keep me active, and not to keep resting to avoid my muscles from getting stiff. But the truth is i just don’t have the strength sometimes, no matter how much i have rested..even if i have not done any work the whole day…. i look fine from outside, but i am not fine. 😦

     
  3. Maddie

    July 27, 2015 at 7:56 pm

    My daughter was diagnosed with Dermatomyositis in 2010 she is so weak at the moment that she can hardly walk she has heart failure problems with her lungs and liver as well as kidneys It seems that there is no other patients in South Africa with the disease??? Where can I get in touch with other DM patients??

     
  4. MARISSA McBETTY

    November 24, 2015 at 1:56 am

    I am so very happy to share this great and wunderful testimony about a powerful Herbal Doctor , DR ODIGIE who rescue me from this deadly disease called (DERMATOMYOSITIS ), I am MARISSA McBETTY from UNITED KINGDOM , i was once suffering from DERMATOMYOSITIS and i tried my possible best to get cured but all seems in vain, So all through this period of my life, i was unhappy until the very day i came across the testimony of a lady on a blogger testifying how she was helped by DR ODIGIE in curing her HERPES and she also mentioned that this same man can equally healed and cure any sickness with his herbal medicine, So without any doubt, i contacted him on his email which is (drodigiesolutiontemple At yahoo.com) and i explained my problems to him, without wasting time, he told me that he is going to help me , So he prepared a herbal medicine for me which he sent to me and he told me to using it according to the instruction that i will see on it, so i abide to him, before i know it, i was beginning to feel some changes in me and i went for medical check up and to my greatest surprise, i was healed and cured from the disease i tut can never be cured , I am so very happy now as i am sharing this testimony and i want to use this medium opportunity to tell anyone who is having this sickness DERMATOMYOSITIS or any kind of disease like HERPES, HEPATITIS B .HIV AIDS, Cancer, syphilis, gall stone and lot’s more should quickly contact DR ODIGIE on his email at:(drodigiesolutiontemple At yahoo.com) . His Herbal medicine is one of a kind and i believe he can also cure you too just as he has cured me

     
  5. Michelle

    June 7, 2016 at 11:40 pm

    I am currently doing a dermatomyositis/polymyositis study in pretoria, South Africa. I still need 2 patients who are willing to participate. It will involve 12 weeks of gentle exercise and stretching. We have had fantastic results with the other patients thus far. Improvements in lung function, HRV, muscle strength and cardiovascular ability. Hoping to find one or two more that would love to participate.

     

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