Myositis UK

Hi, new here, and would like some help if you could please? :)

Hi Guy’s.. New here, but think I may be getting closer to my actual problem as time goes by.

I’ve had muscle aches and pains for years now (54 years young) and have been to the docs to see what it is... I’ve been tested for most things but never had inflammatory markers (well.. it’s been on top limit) so they never went this way... More Neuro, infection or Physio etc... all came back negative. I did have UC years ago which is another inflammatory issue so may be go hand in hand?... I started going to the gym to and keep myself moving and so I didn’t ache as much.. all worked well for years.. maybe a slight decline but I am getting older.

But whatever I have has taken a bit of a step change of late. I’ve sort of got worst in winter and better in summer I think for the past few years.. not sure its seasonal, more a good period / bad period kind of cycle and within this, smaller cycles where it gets better / worst.

But this year has been a sod. I’ve felt very bad all year so decided to try running and do a 10K in August (kill or cure). I’m weak in the core and despite doing what I can at the gym, I don’t appear to get it better.. stepping over things in the garage is a problem .. so I thought running may help.

Training went okay (although it was very hard work.. much harder than others or so it appeared?) and in August I did the 10K.. but I did find whilst doing this that my ability to stand for long periods was going downhill fast.. I could run and walk, but standing did me in... This has progressively got worst until I’m at a point now where I can stand for about 10 mins and them need to sit down.. rest and I’m off again, but keep walking or it will seize up. Also walking is a problem now as it gets worst.

Needless to say, running has come to a halt as my doc said it was my spine etc.

My back cracks for fun now and I get burning sensations either side of my spine. I also get pulling type of sensations and try do anything new like I tried Pilates, the muscle pain a few days after was mad.. like DOM’s x 10 with stabbing, pinching etc...

I also get very out of breath... a day in the garden now last 15 mins and I have to come in and sit down.

The last 4 weeks has become quite imposable.. I have the back and standing issues, I’m finding it hard to breathe as my chest is quite tight, I kind of have a pulling from my back into my abs and lungs making it hard to get a deep breath at times, and I have throat issues. At first I thought this was GERD, but it’s like I have a hard to swallow sensation in my throat.. I can get food down, just feels not normal if you know what I mean. And I’m sure its now going into my shoulders?

So I’ve been back to the doc’s and she can tell me what I don’t have, but not what I do have. I’ve described everything to her and she wants me the see muscular skeletal again. I’ve asked to see rheumatologist but she’s having none of it as I don’t (or at least didn’t) have the markers.

But to me it’s like I’m seizing up.. like my muscles need oil? They ache, I get stiffness, and they are getting weaker.

I have noticed of late that it’s there when I get up and maybe works off a bit after I’m moving, where as before, it would just come on over the day.. Oh, and one more thing.. I could sleep at the drop of a hat.. washed out most of the time.

Does any of this add up at all.. does it sound like some sort of muscle inflammation disease?

Any comments would be gratefully received.. Many thanks 

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Hello JDB1964,

What a series of events. I would push for a medical referral, Gps are so busy these days that they are not looking for unusual symptoms that don’t fit into any boxes. I was very able until 2014, I’m a bit older than you and woke up one morning and couldn’t get out of bed. I struggled for a while and then noticed other symptoms, I went privately to get a fast appointment and deteriorated quite quickly when my muscles in my arms and legs stopped working properly. After a 2 month stay in hospital I was diagnosed with Myositis with a Scleroderma overlap and I have a good team looking after me. The initial private consultation was a godsend as my rheumatologist then saw me afterwards on the NHS. It sounds like your body is struggling and with your muscles you need to get looked at quickly. Fortunately, I am fairly stable now but I get very tired, out of breath and generally have to take everything very carefully.

Keep a diary of all your problems and try and get a referral.

Good luck.

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Thanks MEW53.. but a referral where?.. I’ve been everywhere possible at least twice now. I think my Doc has given up on me so I’ve started seeing other Doc’s in the same practice, but for the first couple of times you see them, they just go over the same old ground. What I do find with the NHS (as wonderful as it is) is that no one looks at all this issues as a full picture... they all deal with their own little bit so they never hit on the problem if it covers a few areas.

I do have a private Sports Physio on the case now through AXA and against my initial thoughts about yet another physio, he does actually appear to be on the track and looking beyond the obvious... so fingers crossed.

Your symptoms are what I want to avoid. I do worry about waking up one day and not being able to move! (although that may enable a diagnosis)... good luck with your onward recovery and I hope everything keeps improving for you !!

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Hi JDB1964,

You need to get a referral to a rheumatologist/ specialist but this has to be done through your GP. Heliports has given an interesting reply, my CK levels were incredibly high at the beginning and took ages to reduce. I had lots of CT scans, MRIs, endoscopies, video fluoroscopy (swallowing camera), ECGs, lung function and many more investigations. My muscles don’t work properly in my oesophagus so eating is very difficult for me.

I got admitted to hospital after seeing my consultant rheumatologist at an outpatient appointment, I was so ill and was in a wheelchair by then fortunately my husband had packed a bag and I was admitted straightaway. The consultant could not believe my decline since the previous appt. I now walk with a stick but my cocktail of drugs has helped me enormously and I have a good team of medics looking after me.

Maybe trying ringing NHS direct and asking how you can escalate the situation.

Good luck

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Have you had a blood test to check levels of creatine kinase? That is released when muscles are damaged. When I saw my GP because I had muscle wasting, that was one of the things that was tested. My CK back in June was 4900 (normal max is 200) so was referred to rheumatology. Long story, but after seeing rheumatology in emergency clinic, then went to neurology, oncology and now am back at rheumatology. Had EMG test which showed nerves are ok, issue is with the muscles. Also muscle biopsy. CT scan showed what they thought was enlarged lymph nodes, hence my diversion down to oncology, as they thought the muscle disease might be caused by cancer. Thankfully it appears not which is why I’m back at rheumatology this week. It will be my 20th hospital appointment since the start of August. My symptoms started earlier this year with me noticing I was struggling with stairs, stepping up onto a kerb, doing things in front of my body. I had previously been fit and well, ran a half marathon in September 2017 and 10 mile race In October. Has also affected my swallowing, food feels like it’s getting stuck. Had an endoscopy which was clear so after that had a manometry test which checks the pressure in the oesophagus. Results showed that those muscles aren’t working properly. Keep pushing with your GP. I first went in June and was referred as ‘urgent’ with my first appointment for rheumatology due in mid September. I went back and saw a different GP and said I was concerned about how my condition seemed to be deteriorating and she agreed. She phoned the hospital and they agreed to see me in their Acute Medical Unit. I’m tired out by doing very little, some days it feels like a struggle just to keep myself upright because of my loss of core strength. My CK level is now 8000 so I’m really hoping for treatment and answers when I see the doctors this week.

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ok, thanks All for your replies... and I hope you get answers as well as myself!.. guess the msg is to keep pushing... so will do. Like the idea of calling the NHS and asking them, but not sure who I'd call, but worth a look I guess... many thanks again... will see what I can find tomorrow .. :)

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just looking on my medical file and it shows Serum Creatinine 64-104 at 111 so outside, but I'm not sure that's the same thing. But tests ongoing now following more bloods Today... I'm sure they will of included this?

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I saw my rheumatology consultant today and had a diagnosis of Dermatomyositis confirmed. I was given an iv dose of steroids today (1g) and go back tomorrow for another dose of the same. Then it will be 60mg daily for 2 weeks, then down to 40mg. Will see my consultant after that to monitor things and see how it’s going. Keep pushing for answers. Those who shout loudest get seen.

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fantastic news.. one more cured means they can spend more time with me LOL... seriously tho... I hope your on your way for a full recovery!!.. :)

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Many of your symptoms are like mine. I have myositis with neuromuscular junction dysfunction but also small fiber neuropathy and a couple of other things that don’t mirror yours. Muscle weakness, can’t stand long or walk far, now trouble swallowing (muscle spasms in esophagus and diaghragm) among many other things.

I’ve never had the blood markers. The only things that are off - my total complement is always high (off the charts) but that’s nonspecific, just means inflammation and my ALT is sometimes high. That can mean muscle, not just liver. However, I am thankful to have found a neuromuscular specialist that found the muscle weakness and followed up with an EMG to confirm my diagnosis. I’m in US so I don’t know your system well, but it would be good to try and see a neuromuscular specialist or someone who specializes in things like myasthenia gravis.

Every rheumatologist i’ve seen says fibro because they love blood tests. But they don’t do the muscle testing and don’t see that side of things.

I surely hope you can find some answer soon!

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great.. thanks for that.. another one for the list when I see the doc.. problem is the list is getting longer but we only get 10 mins here in the UK so state our case... will mention it to the Muscular skeletal team tho... hope they can point me in the right direction... hope your getting better yourself now!... many thanks

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JDB. You describe exactly what wS happening to me before I was diagnosed with Anti Jo Polymyositus. Please go back to your dictir and ask fir a referral to a Rheumatologist. If the GP won’t do this then ask the question. Coukd this be Myositus and can you check my CK and my liver enzymes. Can you run a Myositis Specific auto antibody panel. Please insist on a referral if the GP won’t run these tests. thus us a rare disease and the Gap has probably never seen it if geard if it, don’t give up on this, best wishes,

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thanks for that... my blood test are in so I will see what my CK level is like... then I have a few questions to ask... and will put this forward.. many thanks... I think I will also ask for a Lymes test as reading this, it has just the same symptoms after a few years...

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Hi! JDB1964

Just wondering if they have done a muscle biopsy yet? I went through a myriad of tests as well and nothing showed up until the muscle biopsy results, which I wish I would have done sooner. Your symptoms sound very similar to mine. It amazes me how all the blood work can come back within normal limits and yet your body is telling you different.

Good luck!

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Hi Santa.. Do you know what you have at all?

3 things not done yet as I see it. brain MRI, spinal tap and muscle biopsy... I need to know, this weekends been bad again, just can't stand now without my back giving me hell... getting very fed up... some bloods back, CK must be ok as nothing said there but not got full results as yet :( Uric acid was high??..

Personally, I think I have all the markers of MS... I've even looked at MND.. but the nuro has seen me twice and says no.. its my core where I have the problems, but they test your arms and legs??..

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Hi JDB1964

Push for the muscle biopsy and good idea to get an MRI as well. Like I said the biopsy was the final piece of the puzzle for me. I was diagnosed with a very rare myopathy called nemaline rod myopathy and it can be genetic or possibly auto immune. It's so rare that none of the many doctors I have seen have even heard of it. Good thing is it can be treated(if not genetic) So I'm just waiting to get in for treatment. The symptoms with myosotis seem so similar to mine, so that's what I thought I had. My MRI was clear. I also was tested for Lyme but was negative. One distinct feature of my myopathy is weak neck extensors. I also have the brain fog you speak of🤕 Good luck!

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Many thanks for your post... I've been going down hill all year... Saturday was very bad, but Monday night I was 80% better??!!... since then its gone down hill again, not quite to where I was, but heading that way... So, hope in the fact that it can improve (only thing I did at weekend that I'd not done in ages was have a glass or two of red wine?), but no real idea why.. just something out of the blue?

I see the doc again Friday next week, so will push for biopsy... thanks :)

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Yes it does, especially with the lung issues and the swallowing you describe also the fatigue plays a big part with Myositis,

Push to see a Rheumatologist it’s vital you get a correct diagnosis .

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Hi.. I assume you are commenting on the initial post and not any of the comments here... I have a first date next week with a Rheumatologist, so we'll see what he says. Had to go private but worth it if we find something... then how to treat it?... :)

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Yes hope you get on alright .

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Only thing is I get fog also.. not thinking straight, memory, typing issues etc... but I guess this could be related as well?... will find out next week I hope :)

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