Firstly let me apologise for the length of this. I know it's not a good idea to ask for diagnoses on here, but I have a VERY long wait ahead of me here to see a rheumatologist (6 months!) and wondered if I might get a head's up. I asked to be referred because I suspected psoriatic arthritis. This was due to constant eye and collar bone rashes coupled with muscular & joint pain. I thought it was maybe inverse psoriasis (I don't have standard psoriasis) but I was always a bit perplexed as to why I didn't get it in places where it would have been more 'appropriate' (it occurs in areas that sweat mostly).
Because I'd had severe trouble with pain & tiredness today, in desperation I Googled 'muscle pain, rashes, fatigue' - just those 3 things - and it brought up dermatomyositis, which I'd never heard of, but it seems an even better fit than psoriatic arthritis.
My chief symptom has been 'panda eye' rashes and a rash round my collar bone which would go round to the back of my neck. It gets raised and red and is INTENSELY itchy, and feels like sunburn if you scratch it. One of the things that struck me when I read the myositis symptoms on a website is it said the rash patches will often have small blood vessels showing and I have that when it's bad.
I've been treating it with hydrocortisone cream and they do go away, but only for about 10 days to a fortnight and then they come right back. I've had it on my eyes, collar bone, back of neck, nipple and belly button. I also have a patch of it on my chest that hasn't started itching (yet).
My muscular pain is longstanding and is chiefly my back. From my shoulders to my lower back, it hurts permanently. I have difficulty standing upright and it feels as if my muscles can't support me. I also have pain in my knees, hips and feet, along with ankle tendonitis. I get very sore and tired with exercise, and exercising regularly (I try to walk every day) doesn't improve my fitness, it just makes me very, very tired. I get very sore and stiff after exercise and it can be quite embarrassing on the bus as I find it hard to stand up and walk after I've been sitting a while. I can only go on the upper deck of the bus on my way out, on the way back I can't manage the stairs. I find that I drag myself upright rather than use my muscles.
I could go on all day listing muscle problems so I'll just say I hurt a LOT and I get far more tired than I should be. I'm only 61 and feel that my level of fitness is more like that of a 75 year old. I feel also it's being dismissed as the aches & pains of aging when it is disproportionately far worse than that.
I'll stop there or this will turn into a novel of My Suffering. All I want to know is does this sound like it could be dermatomyositis? I know the condition is very rare and it seems so unlikely but it does seem to fit very well, except I don't think of my muscle problems as weakness but more pain, although the back ones in particular do seem to stem from a weakness. A physiotherapist told me it was bad posture, but I wanted to retort that I only had the bad posture because the pain wouldn't let me stand upright!
One last thing - can my GP do any of the blood tests that they use for this? I was thinking it would be good if I could get some done as it would either prove it wasn't dermatomyositis or, if they were positive, it would give me a head start with the rheumatologist and I wouldn't be dismissed as just another fat old woman imagining things. I had an ANA test (I think it was) done recently but it was negative, but I read that doesn't disprove dermatomyositis. Many thanks for any help.
P.S. I should just add that I have very bad problems with breathlessness, which sometimes gets so bad that any exertion has me panting like a dog. I live on a hill so I have to climb it to get to my bus stop. Despite doing this every day, it only seems to get harder, and I find my level of 'distress' embarrassing because I'm heaving away like I weighed 300lbs and never moved! On bad days I often have to slow down and sometimes feel like I want to stop just to try and get some air in my lungs.
Written by
Chancery
To view profiles and participate in discussions please or .
Really sorry to read you are struggling. I am not able to help you regards any diagnosis but wondered if you had looked at the images on the following site to see if these fitted in with your skin symptoms, if not then the primary care dermatology society website has a fantastic amount of pictures and information for very many skin conditions, when you search a condition it appear the photographs when available are towards the end of each page:
Thanks, Gillian. Yes, my facial rash looks exactly like that one. I also have it on my collar bone, round the back of my neck and teeny patches on my nipple and belly button. I do also seem to have similarities about the nail folds. However, my only real muscle weakness is in my back. I guess I'm going to have to wait until I see a rheumatologist - in 6 months time! I only hope that if I do have it, mines isn't associated with a cancer, because by the time they see me it will be well advanced...
I would honestly make an appointment with my GP and take a full copy of the findings, including photos, from what you have seen from the dermatologist society website, give GP the link too and request some medication. Explain how worried you are and that a six month wait is unacceptable with no medication management, a rheumatologist may not be the right area of medicine, maybe seeing a dermatologist too.
Yes, I tried asking for a dermatologist when I last saw the doc, on the grounds that if rheumatology isn't the right place then I didn't want to have to wait all over again, but she told me the waiting time for dermatology is 12 months (no, not kidding) and I would be better to just see the rheumatologist. Not sure if that's smart thinking or not!
Such a difficult situation having to have all these waits, I think the waits are pretty much the same everywhere within the NHS. Has your GP's referral to the Rheumatologist mentioned a possibility of Dermatomyositis?
Has your GP not been able to try you on prednisolone oral and topical? I understand the GP is not likely to be in a position to prescribe Azathioprine and Methotrexate or infusions
Might be worth contacting rheumatology and seeing they run a cancellation list, providing you can get there at short notice.
No, when I saw him (my old doc - I moved because of that visit!) I was thinking in terms of psoriatic arthritis. I thought my rash might be inverse psoriasis. He was NOT convinced and told me you only get PA if you've had psoriasis (not true) and that you don't get psoriasis on your face - also not true according to several people on the Psoriasis forum. However, that was my best guess at the time. I know on blood tests that were sent off at that time he'd put on them that "patient complained of rashes and aches", i.e. the usual woman moaning about her aches and pains, so that's probably what's gone to the rheumatologist too. I only discovered Dermatomyositis very recently, literally a few days ago, and it's the similarity of the rash that really nailed it for me. That and the tiredness and this muscle weakness on my back (which isn't a standard symptom as far as I can see) and my breathlessness, which apparently can happen if the lungs are affected. Of course, it still proves nothing.
I took prednisolone in 2018. A five day course for a rash (drug reaction, different from this) and it was wonderful, a revelation. I felt like I used to feel 20 years ago. Apparently with PA that's actually something of an indicator that you might have the condition, if you have a very positive reaction to steroids. However, I developed a big red balloon face, very burny, and it never really went away, as in I got it again, twice, several weeks later, plus the burning sensation never left my face although the redness went. I also started developing these rashes round my eyes - the same rashes I have now. I always assumed that the steroids caused the whole cavalcade effect, but I'm wondering now if I had an underlying condition which steroids improved, then caused a rebound effect when I stopped them. In other words they sort of back-handedly triggered what was already lurking. But then again, maybe not...
Here is simply what I would do, request a copy of your medical records from the doctors, including test results from the period around when you saw the old GP, or before, and the tests you had completed, including results, and request a copy of the referral to rheumatology, this way you have everything the rheumatologist has, these requests can take up to 28 days but you are entitled to copies of all or any part of your medical records, I have copies of everything from the doctors and the hospitals, test results, scans etc.
Next make an appointment with your new doctor, even make a double appointment if you think this is what is needed, before you go get all your things together and list out briefly what it is you are concerned about and ask the doctor to look at the images and compare this with what you are experiencing. It is very clear you are very worried and you should not ever be afraid to voice this to your doctor, sometimes it is better to perhaps suggest you think you might have found what your problem might be, but that you are not the expert and you realise this is a very serious condition. The doctor will, I hope, realise the seriousness of the condition you are speaking about and if required can make contact with rheumatology for an urgent referral. Please take someone else with you in to the appointment that is just going to sit there and listen, this is the same for when you get your hospital appointment.
As far as the prednisolone is concerned I am unsure if coming off this after such a short time you would have experienced this kind of reaction and certainly not something that should have lasted, I am only aware of reactions to longer courses of the drug. It might be an idea to also mention to the doctor how you felt the prednisolone helped you, but mention this was a very short course and you felt awful after you came of the drug.
I encourage you to keep a diary and photographs of how these areas of you body are flaring up and down, keeping a chart will be helpful not only for your doctor to see but also the rheumatologist. I have a chart that I keep that I list sections of my body, my head and mouth, muscles, joints, and genitals etc. detailing how each of these areas are being affected and how I am left feeling mentally and physically, as well as frequency of flares.
Yes, coming off the steroids was tremendously disappointing because I naively assumed they might have improved things permanently, but of course they were a double-edged sword since I had the big red burny face to contend with! I did mention to my docs at the time that they had been hugely impressive, because I thought it was kind of odd, and possibly telling, that they had improved me quite so much in utterly unexpected ways, but, as is normal with docs, this was just ignored. Unless you speak directly to them, very slowly, highlighting "I found it odd that steroids I took for a totally unrelated problem made me feel 20 years younger. What do you make of that?" they will just sail on through, the dears.
I'm sitting on my hands at the moment, watching how things are going, taking note of my rash and even nursing a bit on my chest which formed about a week ago but hasn't itched. I'm building a picture and, as odd as it seems, I'm actually cultivating it instead of slapping Hydrocortisone on it.
Generally, when I find a new condition I think fits (or go back to an old one trying to shoehorn it in) I am rapidly disillusioned as it develops serious flaws almost immediately, ways it doesn't fit my poblems, after I do some research. However, Dermatomyositis has been a good consistent match thus far and I've seen nothing to disillusion me, so I'm just going to sit it out a while longer. I've gone to the Myositis society and asked them if there is anything I can ask a GP for right now, so I'll see what they say, but you can be assured I will definitely take this to my GP if it deteriorates, or if I develop something I feel they need to see that might help me.
Thanks for all your help. I think you and I are on the same page as regards getting the NHS to do its job. And I definitely believe in getting copies of all my results and charting them myself, even when I get long faces from docs and receptionists. I've never understood their reluctance, as time without number me having copies of things has made other doctors lives MUCH easier. I shall persist in being a pain in their medical butt!
Hi Chancery, sorry to hear that you have a long wait to see a Rheumatologist.
Firstly, I can relate to a lot of the symptoms that you have outlined.
I was diagnosed with Dermatomyositis around 5 years ago now. It was a long battle to get the diagnosis as this condition is quite rare.
I was back and forward to my GP, I was constantly told that I had an allergy, but this test proved negative. During that period I was going downhill, unable to wash or dress myself skin on fire with severe rash around my eyes, sclap was very itchy and dry, whilst my back also displayed a rash (shawl effect) skin on face bright red combined with a rash on my neck and chest areas, and also on the knees.
The itch is so intense that it drives you insane, coupled with the muscle weakness, you feel like you can hardly move without pain and always tired, no energy and no quality of life.
I was eventually referred to a Dermatologist, who diagnosed my condition as Dermatomyositis, he also sought a second opinion from another consultant on that day. I was sooooooooo happy that someone actually knew what was wrong and could give treatment to help!
Although I am 5 years down the line, I see a Dermatologist, Neurologist and Rheumatologist on a regular basis my disease is still very active and my body is getting worse, I still remain hopeful that one day I will send this disease into remission.
Good Luck with your diagnosis.
Keep a track record on a daily basis of all you are going through and photos to support it. You will then have a good detailed record for your Rheumatologist to refer to.
I would say that you should get your name on that waiting list to see a Dermatologist.
Thanks, Hope. Yeah, one of the problems I've had is it's been difficult to get things like breathlessness and hurting all over taken seriously - they are seen as very vague symptoms. I've also found that the facial rashes are not taken seriously. I think docs just assume you have sensitive skin, which I do, but because of that practically nothing goes on my skin that's not super-gentle, so why would I suddenly develop rashes? During the summer, when my rashes were at their worst, I stopped taking my meds (Omeprazole) and using moisturiser, and even soap, so that nothing touched my skin but water and I couldn't be reacting to drugs. I even stopped chocolate or anything with caffeine (I'm super-sensitive to caffeine and it does tend to make my skin flush and itch) but the rashes just sat there, going away with steroid cream, then coming right back 10 days later, so I don't feel this is allergic. Right down to the fact that they've 'improved' since the cold weather has come along, which would indicate heat/sun is playing a part in them.
I feel much the same way about seeing the dermatologist - it feels stupid not to get on the waiting list now - but the tired fed-up part of me can't face seeing the doc again. I more or less move mountains to not go to the doc's, but I don't know how helpful that is in the long-term!
OMG, I could be reading about myself! Well, myself two years ago! I too had the discolouration under my eyes, the itchy rash, the tiredness, muscle weakness, breathlessness etc etc..... It used to take me over 30 minutes to climb the stairs at night!! My neck couldn't hold the weight of my head! I had clamps tightening up around my upper legs n arms!
One day I was seeing the GP once again (it was a new GP) and suddenly she ran from the room SHOUTING "Hold The Bloods!!" She took a blood test to check my inflammation levels.
CK for an adult woman should be around 220 - mine was 1700+ and the other levels were high too. Things moved from there!!
YOU have to be responsible for your own health - Get Asking!! DO NOT sit back and let things get worse xx
Now - here I am two years later x I have very little discomfort on a day to day basis, I am back walking, driving, crafting (using my fingers) and doing MOST of the things I could do before x Yes, I have bad days but I have a LOT more good days xx
In between went thro' hell x
I was wheelchair bound, progressed to a mobility scooter then a frame. I had to have a commode downstairs. I could do NOTHING for myself - my husband dealt with ALL my personal hygiene needs ( and I mean ALL!!) he dressed me, he cut up my foods, he wrote reminders in my diary as I was helpless
Keep pushing, ask the right questions, push for what you want and hopefully you too will get it sorted.
I sincerely hope it isn't dermatomyositis but if it is, it can be helped x
If its not - well what is it?? Cos you are not feeling like this for no reason, so someone has to help you find out what is making you feel this bad xx
Hi Rabbity - I just replied to you on my other thread! My condition has never got as bad as yours, thank God. But, of course, being 'tolerably' ill all the time has its own problems because you don't look sick enough to be sick! I doubt my own sickness all the time, which is part of the problem. I'm constantly thinking 'Oh, I'm just too fat, too lazy, not exercising enough, sitting badly' and on and on it goes, but the truth is it doesn't feel right. It's never felt right. The back weakness feels strange. The pain I have in the inner thigh muscle in my left leg feels like a weakness, like a permanently pulled tendon. The fact that if I don't get enough sleep I can hardly breathe on the slightest exertion - they all feel like something wrong, rather than just ordinary everyday aches and pains. Plus I've had elevated ferritin for over a year now (just had it measured again - I'll be very curious to see how it's doing).
Dermatomyositis can come and go, and believe it or not, I dread it going into remission before I have tests done because then no-one will believe me and this will drag on for more years, with me not knowing. My rashes have dropped drastically since the cold weather came along, which is both good and terrifying. Good because it's great not to be itching all the time, and terrifying because I think 'Oh, no, I'm going into remission just before I get an appointment and there will be nothing to show the rheumatologist!' It's sad and ridiculous. I just wish the NHS would hurry up.
Chancery, I am glad you have never been as bad as I was but I would hate to hear from you down the line because you have got worse xx
PLEASE keep pushing.
Take photos of the rash in case it fades x
I STILL have the ones I took and look at them from time to time and thank my lucky stars x
Keep strong!
I of all people KNOW how hard that can be when you feel wrung out because every little thing causes you pain n a shortness of breath but keep pushing forward.
Make a note of changes, dates etc - it will all help with a diagnosis.
Not knowing is SO much harder than knowing what you are dealing with and getting on with it....
Thanks, rabbity. Just had blood tests done and I have elevated potassium, but they think it's probably an error (I think so too) but I'm having it redone tomorrow to double-check. Hopeful the nurse might be able to tell me what some of my results were since the receptionist refused this morning!
SO FRUSTRATING!! Fortunately I can access my results online - dont ALWAYS understand them but when a simple, is it higher or lower scenario, stops all the waiting!
Hope you sort out potassium ( I had to take a potassium supplement for a while -NOT NICE!!)
Oh, how I wish I could get mine online. I've spent years having stupid and futile arguments with receptionists over seeing my own blood tests, for my own body. Seeing my doc (twice!) on the 6th so hopefully they'll have more accurate results then.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Hello! Advice on who to see
