numbness in left leg when rising from sitting

[Stanleychops08]

hi, I have scleroderma and secondary raynauds in my fingers. I take sildenafil which I would recommend as it’s much easier than going into hosp for illoprost infusions which is what I was doing. I’m wondering if anyone with raynauds or scleroderma has experienced numbness in their left leg when getting up after being seated- it’s happened three times now and it only happens after I start to walk or stand not whilst I’m sitting or even getting up from sitting. It does go away but takes a little while of jigging it around. Would really appreciate any insights you guys might have? Thanks Emily

[Stanleychops08]

Meant to put it’s primarily in my left leg

[Barnclown in reply to Stanleychops08]

Hello. Am 68 & have early onset severe Raynaud’s with reperfusion injury in my feet so am on max daily dose sildenafil long term, my primary is systemic lupus. I totally agree with you re sildenafil vs illoprost!

Am replying mainly because my lumbar nerve root entrapment behaved similarly with these sort of symptoms when it was in its early stages years ago. My main vertebral probs are L4/5 + sacroilliac due to scoliosis & Ehlers Danlos hypermobility & age related wear & tear (my neck has similar issues, also early onset like my lower spine). My rheumatologist says that of course your autoimmunity joins the part where every inflammatory process is active in your body, so the daily prednisolone she prescribed in my combined therapy treatment plan helps with that sort of spine related symptom, & I take daily amitriptyline long term for the neuropathic pain inc tingling, .+ low dose diazepam for the muscle spasm pain etc….otherwise I rely on max daily paracetamol because all other pain meds give me fecal impactions (& some give allergic reaction eg oedema) due to my severe mouth to exit slow transit dysmotility

I could ramble on about how I originally got my version of this diagnosed + how it’s been monitored over the years etc…& what body therapies etc have helped, but I’ll hold back on that unless you ask …

Hope you get this figured out 🍀🤞💞

[Stanleychops08 in reply to Barnclown]

Hi, thank you so much for replying. I have degeneration in my l4-5 vertebrae and coccyx pain when I sit so I have wondered if it might be nerve entrapment causing the numbness in my leg. It’s strange though as it’s only after I get up from sitting (not every time) and only comes on a few minutes after I’ve stood and walked around then it does go off. It’s only been during this really hot weather too where I’ve suffered from heat exhaustion so I’m going to see if I keep getting it now the weather is cooler before contacting my specialist nurse. Do you mind me asking what dose you take of sildenafil? I’m on 3 tablets a day each 25mg and I do struggle with headaches from it. Really sorry to hear you have so many health issues- it’s so hard isn’t it- your health is really everything! X

[Barnclown in reply to Stanleychops08]

You’re v welcome!

Good plan: glad you’ll see the nurse!

I started scleroderma protocol sildenafil @ the lowest dose, & within 3 months went up to 150mg (50mg 3x daily) with no apparent side effects, so I feel very lucky, but of course the ischemia reperfusion injury cannot be undone, so I still live managing the terrible chameleon-like manifestations that causes 24/7/12

Thanks for your kind words…I guess am kind of lucky, cause all my immune dysfunction & CTD stuff started early so I’ve had years to get used to living with dodgy health as my normal…although the inevitable progression does feel tough. Am also lucky cause am now pretty thoroughly & convincingly diagnosed & adequately medicated by good medics & Co, which helps me a lot to put up with it all…

Take care & good luck 💞💞💞💞