Numb sausage fingers!

[Melarky]

Sausage fingers mainly index, middle and ring on both hands. Constant feeling of tingling numbness much worse at night. I think it’s carpal tunnel??? Shoulders painful and stiff and weak in upper body and wrists. Finger dexterity poor too! Is this due to Raynaud’s alone? I’m still waiting on a diagnosis as I’m “grey area” but defo have secondary Raynaud’s. Just want to check if this is familiar to scleroderma sufferers or is this more RA or another connective tissue disease?? Any advice on relief for these symptoms very much welcomed. As I’m writing this on my phone my to fingers have almost completely gone numb!! 🙁

[SlasJ]

I got a diagnosis of raynaulds from a doctor who took one look at my hand (due to my white fingers on my right hand) so I am following this as you are describing my symptoms exactly. I am waiting of results from rheumatology consultant and she has referred me for die in the veins to see if it’s narrowing of the veins. I have a horrendous pain that feels like the blood pressure cuff is on tight that comes and goes too.

[Melarky in reply to SlasJ]

I’m under the royal free and they’re doing lots of tests so will know more soon I hope 🤞🏻 Take care. I feel your frustration xx

[KfromOz]

Hi Melarky, very similar to my symptoms before I got diagnosis of Systemic Scleroderma. Would ask dr for ANA tests and similar.

Best of luck😊

[Melarky in reply to KfromOz]

ANA positive for scleroderma but I don’t have reflux and they are describing me as in the grey area! But I am defo getting worse re my hand numbness and function and strength and shoulders are painful and weak and everything much much worse at night. I’m a mess in the morning! Making me feel like an old woman and I’m only 46!!! Sorry to hear u have the disease are you well? Take care x

[KfromOz in reply to Melarky]

Not having reflux a good thing lol! But just because you don't have it (yet) shouldn't count out Scleroderma.....I didn't get reflux until after a year of everything starting.....now can't get by without Nexium 🙄.

2yrs in it's a bit of a rollercoaster, and I understand about feeling twice your age, only 43 and feel 80! And not as well as I'd like to be😊, but you gotta roll with it....😊.

All the best, hope you get an answer soon x

[Hidden in reply to KfromOz]

I am on two a-day of Nexus and they do nothing for me-

[KfromOz in reply to Hidden]

You need to take it for a week to really start working Marymint.

By the sounds of your message below, the pain is reflux, acid travelling up esophagus. I get this and it's painful when I don't take Nexium.

[Hidden in reply to Melarky]

You you every get a bad pain in your chest and feel really ill with the agonising pain - it disturbs my sleep two/three times every night and waking up is do very bad every time - Gets do bad I cannot even help myself to get my glass of water - if if I fall asleep during the day because of lack of sleep through the night - still the agonising wakeup experience

[Hidden in reply to Hidden]

I have tap

[Hidden in reply to Hidden]

I have a prescription from my GP of nexium tables two each day they do not help my night time problems

[KfromOz]

And if you don't already have one get referral to a rheumatologist, preferably one with autoimmune expertise.

At this stage all I can suggest for pain is Nurofen or similar NSAID.

Good luck.😊

[Zazzel in reply to KfromOz]

Please be careful taking NSAIDs. I read that kidney disease is already an issue with Systemic Scleroderma and heavy use of NSAIDs is also a cause of kidney disease. I have a type of kidney disease and it is suggested to us3 Tylenol instead for pain.

[KfromOz in reply to Zazzel]

Agreed Zazzel re NSAIDs...just a suggestion for interim. I took nothing for pain until rheumatologist. Now on Mobic.

I haven't experienced shingles but had a traumatic health issue before the scleroderma came on, which apparently can be a precursor to getting scleroderma or similar.

Best of luck

[Zazzel]

I am following your post as I also have Raynauds, tingling in my right arm, burning feet, shooting pains throughout my body on occasion, hip and shoulder pain. Lots of popping of joints. I’ve had a brain MRI done to rule out MS, spinal MRI, EMG which ruled out pulmonary neuropathy. My neurologist is stumped. Possibly small nerve neuropathy. My DO thinks it’s hypermobility and I’ve been doing physical therapy which has helped, but still have issues. I also was doing a holistic therapy called Bowen therapy which helped, but is expensive so I’ve stopped.

I will look into Systemic Scleroderma as a possibility. Thanks KfromOz for mentioning that. I’ve had negative ANA tests, but from what I read it only shows up in 90% of the cases so perhaps I’m the 10%.

Any chance you had shingles lately? I had them 2 years ago and all of my issues have gotten worse since. Feeling like it caused nerve damage.

[Sanmateogirl107]

immune doctor and pain specialist, rheumatologist, start taking probiotics every day ask about gabapentin. i am on 600mg i have erythromelagia worse than raynaud's i can not feel my hands or feet. blue, purple, white, amlodipine 10mg hardly helps. putting my hands in water i scream like a banshee. it hurts. ask your doctor about HAND PT. acupuncture also might help. support group and pain meds right now. good luck also tumerick with pepper is great for auto immune. fish oil also. good luck angel julie

[Zazzel in reply to Sanmateogirl107]

I'm so sorry to hear you are in so much pain. I hope you find solutions soon.Sending prayers,and positive healing thoughts to all of you.

[Melarky in reply to Sanmateogirl107]

Gosh sounds awful! So far water is soothing! Wishing u better and symptoms stop being so aggressive. Take care and thanks for advice xxx

[Jacko37]

Hi

Sorry I don't have any answers but I totally understand how you feel. I have exactly the same pain with my neck shoulders back and arms. I just can't do anything any more and this has been going on for nearly a year. I know that it's not much help but you are not alone, take care, hope you get some help soon, x

[Hidden]

I seem to have come to the right place today I have had this problem now for over three years - do you also have pains in your chest bone and very bad agonising pain every time you wake up during the night ?