Muscle inflammation

[Cal66]

Does anyone have inflammation in their muscles & if so what type of treatment do you take?

[happytulip]

Yes, it's terrible!! I am on high dose of pred which helps but equally not ideal. The rheumatologist team are trailing me on methotrexate at the moment, it's my third DMARD.

The best treatment that suits me for muscle inflammation is diazepam. Everyone will jump up and say how addictive it is etc, and yes it can be. BUT when used responsibly it offers great pain relief to me. I get horrendous inflammation in my upper arms and thighs to the point that the muscles are visibly swollen and red. I have an agreement with my GP and pain team and manage the symptoms well with oral morphine, diazepam, paracetamol and pregablin. But it is the diazepam that helps the muscles so I only take it when my muscles swell.

Hope that helps.

Ps: a Bath of Epsom salts is also brilliant but be cautious about how long you stay in there!

[riannabri in reply to happytulip]

I agree Diazapam and a glass of bolly, doesnt kill the pain but sure relaxes your muscles - Im newly diagnosed cant walk for pain and said to new consultant thats what I did and he said if it works carry on

[PMRpro in reply to riannabri]

Wish someone had offered me that instead of the infusion of diazepam they used when my back was in meltdown! I managed to be the one who developed a rare but known severe reaction to it - 4-5 hours of severe atrial fibrillation. They assumed it was the high dose steroids and stopped them but gave me a second infusion of diazepam. Second night of same! I politely declined a third attempt...

[Cal66 in reply to PMRpro]

Hi

That is terrible, I don't blame you refusing the third. I only came off prednisone 2yrs ago after being on 20 years & can't take high dosages because I get problems with my heart. However m

[Cal66 in reply to Cal66]

However my Rhumatologist says my blood test is satisfactory and so I am still unable to find out if it's this or not, but the pain in my thigh muscle feels so intense at times especially if standing or bending. I will just have to wait and see what happens next.

[Author_ink]

Yes i have it in my thumb back and shoulder. My lupus Dr never gave me anything for it. The meds i take plaquenil is for inflamation but it never helps. So i just cope with it one day at a time. I take lots of hot bubble baths and see massage therapist. I think if our rhemy dr had lupus they would treat our condition better. 😄😈

[Bakbre]

Hi there

I have connective tissue disease and I get inflammation in my upper arms, shoulders, wrists and sometimes lower legs - it is horrible. I get it so bad in my shoulders and arms that my husband has to dress me.

I have been on Hydroxychloroquine for about 10 years now and 2 years ago that stopped working so they tried me on methotrexate twice (both times with awful results), azathioprine which didn't work and I am now on lefludomide and a small dose of prednisolone - which touch wood seems to be working in as much as I don't have pain all day everyday, only now and then. I hope that helps.

[Author_ink in reply to Bakbre]

What is connective tissue disease? I have severe pain in all the areas u mentioned

[Paul_Howard Partner LUPUS UK in reply to Author_ink]

Hi Author_ink ,

EOLHPC recently shared an article about connective tissue disease which is really informative - healthunlocked.com/lupusuk/...

[MargaretGail]

I have a lot of muscle inflammation and the rheumy put me on Amytriptiline which worked really well but had some side affects so the GP has put me on Nortriptyline. I'm also on prednisone Hydroxy and Azo.

[LalSD]

Hello Cal66. I always have inflammation of mucsles. The pain is sometimes unbearable. I found castor oil (applied externally) and ibrofen often helps, I take ibrofen no more than three days in duration and use black castor oil to reduce the swelling externally. It helps without the need of heavy medication, I would recommend it if you just want to try the oil. My daughter also has systemic lupus and I use it to reduce swelling and pain in the same way. Hope it helps. I wish lupus could disappear but I live it everyday and feel the pain everydY. I opted not to use strong medication as yet and mAnaged just with plaqunil for over 8 years. I think i need something stronger as the pain is more than before but still hanging there. Hope you feel better.

[Penelope-Mary]

Hi Cal, I too have myosotis which affects my life more than any other symptom present...fatigue , fog etc...so it is all consuming at times.

Apart from the usual meds; hydroxy, Celebrex, leflunomide ,dhea , prednisolone is the drug of choice, you probably should speak to your doctor and up the dose if you are not already on it.

And

Yes happytulip, I'm with you on this, diazepam is the most targeted drug for me too, when the pain, inflammation and weakness becomes unbearable.

I take a 5mg or half depending on what I need to do ( drive for example) and feel immediate relief...muscles twitch less and feel less sore to touch.

I also occasionally take panadol +codeine+ calmative ( doxylamine succinate), which is sold over the counter in many places.

Don't fear taking these medications as required, if you really need and benefit from them you will not become addicted. Listen to your body, this disease is hard enough on us without adding guilt.

Hugs 🤗

PM

🏝

[Cal66 in reply to Penelope-Mary]

Hi

Thank you for your kind advice. Last Thursday, I had blood test to check for Myosities. It's odd because I have had SLE for over 25 years, but had never heard of it before. I don't know if because I didn't have any symptoms before or if they have been because I had been taking Celebrex for 20 years and now I am not that may have masked the pain or if it's something new, I will just have to play the waiting game until my consultant gets my results.

I am currently taking Hydroxychloroquine, Tramadol, Paracetamol and Amitriptyline though at the moment I am having to take 45mg pn as the pain is quite bad.

I had originally thought that the pain was because I have had problems with my leg ever since my knee replacement and the pain not been so bad I would not have mentioned it to him at my appointment last week.

Sorry I didn't give all the facts last week, because I fell asleep while i was writing it.

Thanks everyone for your advice & if it is this then I know what medication to expect to be given for it.

[Penelope-Mary in reply to Cal66]

Hope they find something that is treatable cal. Seems to be what we all fear, just another pain or new symptom that is lumped into being SLE.

All the best, do keep us posted.

PM

🦋

[Cal66 in reply to Penelope-Mary]

Hi

Thank you, if it takes as long for a firm diagnosis as it did for SLE, you will be waiting 5 years for an update,. I am keeping my fingers crossed that it isn't too serious.

Bye for now

[Jo-Goode]

I've had Myositis for 23 years with over's overlap autoimmune, my main treatment is IVIG.

There are specialist Myositis clinics around the UK that you can be referred to via your GP. Information can be found on healthunlocked.com/myositisuk

[Cal66 in reply to Jo-Goode]

Hi Jo

Thank you. I have had a quick look at the site you mentioned and found it quite interesting, but I am not going to join it until I am told by the doctor that I have it, because having SLE , RA & everything else and that as well will be a little bit too greedy, so I will need to share everything around, any takers?