Crest raynauds and all the symptoms of polymyositis

[Psg83]

Hi I'm a 57 year old male with CREST Raynauds overlapping other interconnective tissue disease's

I have recently having a lot of problems with stairs . getting up from seating and laying down to sleep .My wife as been looking on line and come's up with I have all the symptom's of polymyositis . Can anybody tell me if these ailments are common

Thanks Pete

[Inamoment]

I thought was just a symptom of scleroderma. Mine has been getting worse, stiff and sore head to toe the entire time. I almost always wake up at night and have to move around a bit and maybe have paracetamol to get back to sleep. Opening a cat food sachet is often quite a physical challenge!

[Psg83 in reply to Inamoment]

Hi Inamoment

Thanks for your reply to my post .I will be getting in touch my Rheumatology department in the next couple of day's and I will post the answers that I'm given .

Thanks Pete

[MissusTee]

Poly myosotis will make it difficult to put your arms up, and affects muscles close to the trunk. You would be anti pm antibody positive.

[Psg83 in reply to MissusTee]

Hi MissusTee

Thanks for your reply , I know I have the anticentromere antibody The CREST the raynauds and was told it was overlapping lupus . I can't get my head round some of the things , It usually finishes with look on line . I will post any updates I have when I've

seen the Rhuemy

Thanks Pete

[MissusTee in reply to Psg83]

I have anti centromere, and anti pm antibodies as well as a few others, so you can get overlaps etc. Just to be greedy!

[Irene55]

I have Scleroderma with a Polymiositis overlap. I lost 5 kg in muscle and hardly had any strength and had a lot of pain. When I was diagnosed the rheumatologist gave me steroids. It took about 1 year to get my strength back and after 2 years was completely off the steroids. He will probably give you Prednisolone or something similar if it is Polymiositis. It is easily managed.

I know being ill is not good but one upside of having an overlap illness I have discovered is that you have a milder form of each. I have an appointment with my rheumatologist in April and with luck I will stop the Mycophenolate for the Scleroderma. This means I won't have any medication for the condition at all. I am waiting eagerly.

Good luck with your appointment.

[Psg83]

Hi Irene55

Thanks for your Reply . The muscle and strength loss and the pain .Describe my symptom's so well . It's become hard work to take off a jumper ,walk my dog or climb the stairs .Sometimes it's more difficult to get down stairs .

After reading your reply . I feel a bit more optimistic about the future . I will post any progress on this page .

I hope that everything goes well for you in April .

Thank again Pete

[Irene55 in reply to Psg83]

I also found getting dressed was difficult. Buttons were like knives on my fingers and I was wearing loose clothes because raising my arms was difficult. I saw my arms and legs in the mirror one day and thought I must be aging prematurely because they looked so wasted. But after a few months of steroids they were looking normal again.

Getting down stairs became so hard I was coming down backwards at the end.

I hope you get a diagnosis soon.

[MFC911]

Hi Pete,

I'm a year older than you, I have "CREST" the quack definition is: "Systemic Sclrosis". Connective tissue disorder. They seam to call it something different every month. I too have trouble with the stairs, well, I have trouble with everything these days. I wouldn't be too quick to add to your list of illnesses. From what I gather the collective problem us sufferers have is poor circulation. Your circulation is poor, hence your muscles don't get enough oxygen fast enough to get them working as well as they used to. Going up and down the stairs is like overdoing it at the gym the day after. Then, because it hurts you do it less, the less you do it the more week your muscles become. It's a viscous circle.

I take 150mg sildenafil, 60mg of nif

[Psg83]

Hi Thanks to Everyone

Your replies have been really helpful after talking to my Rheumatology nurse . I've been told its probably part of my condition She has arranged blood test . and given me appointments for the physio In the mean time I'm going to try some cbd oil for the pain

I will post the effects , hope it works

THANKS to All Pete l

[MFC911]

Sorry Pete,

That was case in point. I fumbled my pad and published the reply before it was finished. So, to continue........

150mg of sildenafil, 3mg Warfarin, 60mg of Nifedipine for circulation and another 28 different meds every day.

I would suggest you have a word with your Rheumatologist and see if you can maybe get your circulation running more smoothly. In my 22 year experience that will help your cause. I would be very cautious about looking up symptoms on the interweb. You will scare yourself silly. I know I nearly did. Let the specialists do the work. That's what they get paid for.

Good luck for the future.

Regards. Mark.

[Psg83]

Hi Mark

Thanks for your advice . I can relate to a lot of the thing's your telling me , has I have to take several other meds each day .Apart from the CREST and raynauds . Amlodipine 10mg tablets , Aspirin 75mg dispersible tablets ,Hydroxychloroquine 200mg tablets ,Tadalafil 20mg tablets, The line < Going up and down the stairs is like overdoing it at the gym the day after. Then, because it hurts you do it less, the less you do it the more week your muscles become. It's a viscous circle.> Sums it up to a T .

I look on the web for answers and advice from other's in similar situations . Seems quiet similar to yours . I try to . Always look on the Bright side of Life ,

Great to get your Reply , Much appreciated

THANKS Pete