Muscle weakness

[Bahmum]

Hi all I'm new here! Understanding that no-one is a doctor I'm just looking for experiences. I've been struggling with very bad muscle weakness/stiffness the only way I can really describe it is feeling like I'm wearing a lead body suit but at the same time my muscles feel like jelly. I struggle with raising my arms above my head to brush/wash my hair and reach into cupboards and get a burning sensation like I've just run a race in my back and legs when I stand up from sitting that doubles me over. Climbing stairs is the same. In general I just ache and feel weak!

Does anyone else experience this as part of the condition and have you found success with any home treatments?

Xxx

[Cathyan]

I’m sorry to hear about your muscle weakness Bahmum. Have you been told it’s part of Lupus? Your symptoms could fit those of Polymyalgia Rheumatica which can coexist with Lupus. Worth a chat with your doctor perhaps. Hope you can get some help to settle it down.

[Bahmum in reply to Cathyan]

Thank you for your reply I haven't had much help from GP's as I keep getting passed from locum to locum who don't really understand lupus and haven't seen my rheumatologist in over a year. I will look into Polymyalgia Rheumatica xxx

[chrisj]

My mum complained of similar symptoms in her 80s and was diagnosed with Myasthenia Gravis .

I was diagnosed with mild SLE in 2005 and couldnt lift my arms to brush my hair, other problems too but I can identify with most of the symptoms you mention. Your gp is the one to speak to.

[Bahmum in reply to chrisj]

Thank you for your reply - and sorry to hear that you identify with the symptoms. I have never heard of Myasthenia Gravis I will look into it. I do need to speak to a GP however my GP who I used to see regularly and understood Lupus left the area and since then I have been passed from locum to locum via phone who never seem to get it (tell me to rest) and I last spoke to my Rheumatologist via phone in April 2020 🤷‍♀️

[chrisj in reply to Bahmum]

Thats a long break with your rheumatologist!! I haven't seen mine since covid last march but they have rung me to ask how I am. On my last phone call about 3 weeks ago she decided to have me back in clinic, I have a face to face appointment booked for october, blood tests at my gp surgery next week.

Isn't there another gp you can see or talk to? My gp admitted to knowing very little about Lupus, she decided I had RA without a proper diagnosis ☹️ It was a locum who sent me off urgently for bloods in 2005 and the results were mild SLE. I finally got the right medication after weeks of wondering what was wrong with me.

There is a group for Myasthenia in here but you really do need to speak to a professional about how you are. Are you able to phone the hospital? My latest rheumy gave me a card to phone her if I was worried at all.

[MEGS53]

Hi. Sorry to hear about your muscle problems.

It could be muscle dysfunction involving poor energy metabolism - there are many different types - but mitochondrial dysfunction is a possibility. Could you ask your GP for referral to a neuro-muscular specialist?

Please let us know how you get on.

[Bahmum in reply to MEGS53]

That's something I've never heard of before I'll definitely look into it! Anything is worth considering at this point xxx

[PositiveT]

Hi Bahmum. I can completely empathise and understand your lead suit feeling.

I have Myositis. It is one of the many diseases you can get along with Lupus. I urge you to see your rheumatologist consultant asap to get the specialised blood test to hopefully eliminate myositis. Mine started very much like you are describing and took hold very quickly. I am praying you will not have it as treatment involves biologic infusions (which I have just finished last week). I am in no way saying you have it now nor intending you to feel more concerned but I feel I should answer you honestly. Do here goes.

Myositis is another autoimmune disease. It tells your muscles to die.... So a quick treatment plan is essential. I went from being independent to not being able to wash my hair, put my undies on, get things from high and low cupboards etc. I have always been fit running, yoga, swimming, walking, horse riding and I have had stop for the time being. Remember Lupus can affect all muscles.

Now the hard bit of telling you about myositis is over I have some very positive news. My rheumatologist picked it up from my bloods extremely quickly. What heroes the NHS are they have literally saved me. My consultant said this will be tough but it is life saving treatment and I will get you running again! I am lucky to have a supportive and knowledgeable consultant. So he sent me to have lots of scans ultrasound, ct, ECG, cardiograph, mri's and neurophysiology (little electric shocks and fine needles to assess my muscle nerve damage in legs). Once he had all the info he immediately put me on cyclophosphamide infusions (a type of chemotherapy). I have had to have six of these firstly every other week and then three weekly. Yes it has been tough but I have almost got the old me back and can now reach up , down and do all those little things like washing my hair etc!💪👏 I cannot put into words the effect this has had on me emotionally. I truly feel he has saved me from being permanently disabled. I am still waiting for a heart MRI which will show the damage it has or had not done to my heart. The special blood test at the start showed cardiac involvement. He told me on Friday (Last infusion) that I can now go for a gentle swim or ten minute jog no more until the heart MRI. But boy oh boy do I feel so grateful to him and the NHS for giving me this treatment!!🤩👏 He has started me on azathriopine which will hopefully stop me from going backwards. I keep telling myself I will get through this and I know you will too. You just need to get a diagnosis as to whether it's lupus or something else like me. I just brushed it off as lupus at first until my consultant said this is something else. This has all happened very quickly too. I was diagnosed in the Spring and he picked it up in April.

I am sending you all the positivity I can and pray that they can get a diagnosis for you. I hope it's not myositis (which GP 's don't know much about). Please let me know how you get on.

Keep on going fellow rheumy you are stronger than you think and we are all behind you during this journey.

🌻🌳

[Bahmum in reply to PositiveT]

Sorry it has taken me so long to reply I have had issues with my account! I'm so glad you are feeling better now you must be so relieved 🥰 Thank you for the information I have managed to get a phone call with my rheumatologist so I will discuss this with him as a possibility. Take care 💜

[PositiveT in reply to Bahmum]

Glad to hear you have sorted your account issues and good luck with your phone call. Keeping my fingers crossed for you.🌻

[Jmiller623]

Yes, I have this. My CK is perpetually elevated suggesting myositis but it’s mild, not like polymyositis. I’ve had 2 EMG and both were negative. My arms and legs always feel weak and heavy. I loathe any set of stairs. I don’t have MG. Honestly, IVIG and medical marijuana have helped me the most with this. I also started taking CoQ10 and magnesium supplements. I found that these actually did help a bit. Obviously discuss any new OTC drugs with your physician. But you are not alone. I am the exact same way and haven’t found many with lupus and the same muscle fatigue. Sending hugs. ❤️ xx

[Bahmum in reply to Jmiller623]

Thank you so much for your reply and sorry to hear you experience the same! I have managed to arrange a phone call with my rheumatologist this week so I will ask him to check my CK levels. Take care 💜

[MercyT]

Anemia. That happens to me. It’s awful. Obviously get bloods done to be sure. X

[Bahmum in reply to MercyT]

Good idea I haven't had my iron checked x

[Bellissimo]

Hello, I’ve lupus and this describes my legs mostly daily , but more when I need my b12 injections which I gat every 3 months and every night it’s bad.. I was told it’s the lupus.. very hard to sleep with it.. hope you get help soon x

[Bahmum in reply to Bellissimo]

Thank you for replying B12 is a good idea I had a severe deficiency a few years ago! Xxx

[Rosemary76210]

You might want to check for side effects of medications you are on.

[Bahmum in reply to Rosemary76210]

Thanks rosemary I'll have a look! Xxx

[Aeam487]

You are describing my symptoms exactly. I haven’t seen my rheumatologist for 10months so well overdue but have developed these symptoms over the past week. Did you get anywhere with a diagnosis? Hope you are feeling better.