September wows

[Ianrussell69]

Is it just me or the slight change in weather I've got jelly legs back with vengeance legs stop working when I sit down looks like I've been to the monty python school of funny walks (YouTube it you don't know what I'm talking about)and my joints are very sore again so it's back on tramadol and nertriptalean for pain but it's the look on my wife's face that hurts most when I get up looks like she's going to cry told her it will pass soon

[lorna118]

hi Ian, just read your post, you sound like I wrote it, I have exactly the same in everything down to pills you take, I haven't been diagnosed with lupus but with fibromyalgia, I take it you have researched alot about lupus, if so you would have come across fibro, I really do understand what your feeling and its awful, please chat to me if you would like. Take care .

[Ianrussell69 in reply to lorna118]

Thanks for replying ,yes I've read about fibro they have told me at hospital it's lupus no it's ctd no its lupus arrrr no it's ctd ?i kind of understand this as I know it's very hard to get a correct diagnosis but apparently the treatment is exactly the same

[lorna118 in reply to Ianrussell69]

hi again, can I ask how long have you been having all of the aches pains and all the other things, do you get the foggy head, or maybe tell me what you don't get lol, I find it very hard to adjust to living in a different way, I'm normally very active, but feel like something on my back, do you get fatigued, awful.

[Anjic]

Hi.. just wanted to say my jelly legs arrived with the dawn yesterday.. love the description and I will adopt the title if that's ok as I prefer it to my previous title of having 'a wobble on ' kind regards .. Anji

[Ianrussell69 in reply to Anjic]

I'm sure I got the term jelly legs off the site last year discribes it well though

[Celestine71 in reply to Anjic]

🤣. I get jelly legs. Feels like my legs don't want to work properly . It feels like there fat and heavy. What's all that about ? ❤️

[Ianrussell69 in reply to Celestine71]

All I know is I don't like it I was a bit concerned when I first got it as my mum has Parkinson's!

[Ianrussell69]

Hi I've been having joint pain for about 20 yr slowly getting worse the muscle pain I've been getting for 15/20 years the jelly legs which I really don't like I've had 5/6 years the fatigue I've had in veering degrees for about 25 years I can be aright one minute and then I've got to sleep I went about 3yrs without the fatigue then it came back again the dr told me I was wearing out my finger joints! I'm a carpenter ,then went to a dermatologist with my wife she had some doggie moles removed .,he just happened to look at my ears and asked me to get a refured asap when back took a long history told me I was uv sensitive and refured me to rumi as he thought I was a high risk of lupus that was 2 years ago so I was not wearing my finger joints out the uv sensitive make a lot of sense when we went on holiday I was always ill it makes my autoimmune thing worse but the Meds have had a positive effect although the last 2 weeks have been hard ,also my 18 year old daughter has had to stop her apprenticeship this week due to guess autoimmune problems constant tonsillitis and swelling of the spine I feel so sorry for her but I see a fantastic physio and she has just seen my girl yesterday so hopefully she will improve hope this helps

[dianna123 in reply to Ianrussell69]

I am very concerned @ my 3 Kidz......there are connective tissue issues in all branches of their(our families) family. This #^!! will disrupt their lives "yes or no". I thought you wrote "psychic"' not "physio"

HA! - looking for a great psychic who will tell me that everything will be o.k. 🎶🤗🤗

[dianna123]

"Jelly legs" - a perfect tag !

Thx, dianna123

[nanagill]

Yes I do get "jelly legs" and that's exactly what I call it when moaning to my partner

[Freckle1000]

Hi. I have jelly body.

I do come in on the severe end of SLE so don't be alarmed by my gothic experiences.

I've been told the peripheral nerves coming away from my spine have been damaged. Either from the Lupus itself or a protracted B12 deficiency that can cause nerve damage. Gut problems meant I cant absorb B12 through normal digestion. (lupus attacked the stomach lining when I had the 'ulcer' bug). Needless to say I never developed an stomach ulcer.

My particular nerve damage means my neurons don't quite know where my body is in space. Hence the jelly sensation.

Anyway. Its not something to be taken too casually. Get to your lupus specialist / neurologist. Just a wild guess, but upping the medication might be in order.

I've been told Micophenolate is good for neuro stuff.