Advice please

[Melarky]

Diagnosed Raynaud’s waiting on results re scleroderma but symptoms going crazy over last few days! In particular hands swelling fingers and very stiff and painful to fully extend. Some range of movement difficult and generally weak. Shoulders painful too and both hands go numb intermittently throughout the night preventing sleep! It’s driving me nuts. Any advice on ways to manage this??! Thanks in hope xx

[GGhere]

Hi Melarky. I get these symptom too. Hands, shoulders, numb hands in the night just as you describe. My consultant referred me to the physio department and they gave me (don't know the proper name) things to strap on my hands when they're painful and if when I want to do things like gardening or carry shopping. They stop your wrists moving. I find I don't need them all the time and for some reason my hands don't hurt all the time - good days, bad days. I read about them on good old Google and it says it's helpful if you wear them to sleep and I've found they do calm the pain when worn over night. I think they're called wrist braces. The ones the hospital gave me are black with Velcro fastenings. I bought a light coloured pair (boring beige) exactly like the hospital ones on Amazon. Maybe you should check with your consultant if these would be suitable for you.

[Melarky in reply to GGhere]

Thanks will look into that as it’s stopping me sleep. Can I ask do you have scleroderma or just Raynaud’s? I’m still waiting for confirmation as consultant says I’m in an”grey area” but apart from the reflux I seem to have a lot of the symptoms for scleroderma. Hope you are well and thanks for the advice x

[Jen3131 in reply to Melarky]

I think they are wrist splints. I started with Scleroderma in a similar way - ‘grey’ area for 18 months but after 6, even I knew it wasn’t likely to be anything else. It’s 3 and a half years now since I developed Raynauds and swollen hands but try and keep fit and keep positive. Take care and fingers crossed it may not be Scleroderma.

[Melarky in reply to Jen3131]

Thanks Jen. Trying to stay positive but it is all a bit scary and confusing. I’m running regularly so that’s keeping me fit but it’s been getting tougher recently but not sure if that’s real or psychological! My symptoms seem very RA too is that usual?? Or maybe I have RA? Hope you are well x

[Jen3131 in reply to Melarky]

I never know what’s scleroderma, age related or psychological! Or medication related! I don’t known what type of Scleroderma I have either as my test results came back inconclusive.

Some issues I had initially ie shoulder pain/restricted movement abated but other stuff takes its place - variable day by day tbh. I just try to go with the flow. But I’m not to bad - things could be worse so trying to keep smiling 🤗

[Melarky in reply to Jen3131]

Yes I think positive vibes is the key. Take care x

[GGhere in reply to Melarky]

I have the whole works: raynauds, scleroderma, Sjogren's and have visits to cardiology, respiratory, kidney dept, and rheumatology. This flipping disease keeps me busy. Hope you manage to resolve your problems.

[Melarky in reply to GGhere]

Oh gosh you have the lot! Bless u. Hope you are well xxx

[GGhere in reply to Melarky]

Thank you Melarky. I try to keep positive. My consultant says "we can't cure you but we can 'manage' it." I tell myself there are lots of people much worse off than me. I'm still ticking along and will be 80 next year. Like Fairy 56 who chats here says, 'wave and smile' or is it 'smile and wave'. xxx

[Zazzel]

I have Raynauds and also have the stiff hands, shooting pains throughout my body, shoulder and hip pains. I was sent to a physical therapist. I also went to an alternative therapy called Bowen therapy. During the time frame when I was doing both, my pains subsided. It’s expensive so I haven’t gone back. When I do the exercises the physical therapist suggested,I feel a lot better. In my case, I dislocate very easily which causes pain. I was told I needed to build my core strength which will help with better posture and in turn helps the pain. I do “nerve slider” or “ nerve glider” exercises which have helped the numbness. Look them up on YouTube or google. Worth a shot.

[Melarky in reply to Zazzel]

Thanks I’ll look into that. I already see an osteopath who does Bowen therapy so I will discuss this with her. I’ve not seen he fir a while (since these symptoms as they’ve come on so quickly!) so hopefully she will help. I’ll also look at the nerve glider exercise. Take care xx

[Zazzel in reply to Melarky]

If you end up doing Bowen, message me and let me know if it helps. I'm still not sure exactly what of all the things I was doing was helping at the time so would be curious to see if it helped anyone else with the same issues.

[Melarky in reply to Zazzel]

First Bowen complete I’ll keep u posted. It’s very odd but v relaxing 🤞🏻 X

[Zazzel in reply to Melarky]

very odd and a little invasive. not for the faint of heart.

[Sanmateogirl107]

IMMUNE DOCTOR , PAIN DOCTOR, RHEUMATOLOGY, PARAFFIN WAX, BIOFREEZE. ASK ABOUT AMLODIPINE, SLINDELIFIL ALSO CAN HELP. WARM WATER CAN HELP. I DROP THINGS ALL THE TIME IT DRIVES ME NUTS THE DOCTOR DID EMG CAME BACK NORMAL I HAVE NO FEELING IN MY HANDS OR FEET. CYCLOBENZAPRINE, IF THE PAIN IS SO BAD NARCO. HOPE THAT HELPS GET REFERALS FROM THE DOCTOR NOW. JULIE

[pallinurse in reply to Sanmateogirl107]

Ugh! The dropping things drives me crazy some days, too!!!

[Patatie50 in reply to pallinurse]

I drop things all the time. I get so frustrated. Is this tendency to lose my grip on whatever is in my hand related to Raynaud's?? I had NO idea that was a symptom.

I've been treated for Raynaud's for approximately 24 years. Have always taken Procardia XL 30 mg(Generic is Nifedipine). Recently, I've developed terrible pains in my shoulders, neck and head. My fingertips have recently begun to split and crack like they did at the onset of the disease way back in the mid 1990s. They hurt, are swollen, deep cracks in my thumb and forefinger of opposite hand. My left wrist has been hurting but I figured it is due to osteoathritis or now the Osteoporosis (which is a new diagnosis for which I am NOT being treated). My former Rheumatologist would increase my dosage to 60 mg when the finger splitting, swelling and pain would get too bad. His replacement won't increase. In fact trying to get in to see her is an exercise in futility. Primary Care is an outright Quack but l have not been able to find another yet. Toes are starting to crack too. Hands are so very cold. I wear little finger-less gloves inside the house. I'm ridiculously cold and have to wear thick socks, these little gloves, fleece lined vests, even my coat indoors. Cold starts from Inside. Right now I am shivering as I write this. I cannot find anyone near me who is a reputable Internist/Osteopath/Rheumatologist. My former doctor had all those credentials. No one else in my area was like him. Wish he had never retired. Does anyone have suggestions? I am in America, state of Maine. Feel that if I could just get a good doctor my symptoms would be carefully monitored and I'd feel better again. As it is now, I can barely move around and don't dare go outside in this miserable, damp, rainy, snowy climate. Don't know what I will do once the temps drop to below zero. s In advance, many thanks for any and all recommendations.

[Intimeslikethese]

Amlodophine 5 mg eventually helped me. Turmeric in yogurt. Staying hydrated by drinking water, cutting out sugar drinks and constant use throughout day of skin moisturizer. Tramadohl when pain level high, initially with onset of my condition, though for both Raynauds and scleroderma.

[Sanmateogirl107 in reply to Intimeslikethese]

DO YOU HAVE REACH STICKS THEY HAVE THEM IN PT ASK FOR A REFERAL IT MAKES LIFE EASIER ALSO ACUPUNCTURE CAN HELP. LIDOCAINE PATCHES 5 OR 10 PERCENT. DO NOT CUT YOUR FINGERS YOU WILL NOT HEAL AND CAN GET GAN GRENE. JULIE

[136824]

I sometimes take anti inflammatories to help reduce the swelling - I'm also on a morphine patch 20m for pain

[lennyplus4]

I’ve bought 2 different types of gloves, cloth & spandex type ones medium compression, 3/4 fingers covered. They both help but the spandex like ones work the best when hands are at worst & stretch couple times everyday.I honestly found best deals & availability online shopping. Good luck