Hi, wonder if anyone has any tips on severe carpel tunnel pain during the night early morning.
I wear splint at night but when 3 fingers on right hand go numb ( can’t bend them) pain starts right to elbow. I have put frozen peas from freezer on wrist /hand which initially makes pain worse but eventually calms down. I am on 5mg maintenance Steroids/ Rituximab /Mepacrine for Lupus& Sjogrens.
Any advice would be appreciated.
X
Hi Haired, I’m sorry to hear that you’re in so much pain. This is probably a silly question but have you seen your rheumatologist or doctor about your severe pain? I had carpal tunnel surgery a few years ago on my right hand & my consultant has requested a nerve conduction test for my left hand now.
I’m sure I was previously advised to try to keep my wrist elevated at night when wearing my splint. I know strong pain meds help me.
Hope you get some relief soon. 🤗
Thank you for your reply. I had nerve conduction tests some months ago and wear splint at night . Thankfully do not have pain every night.
Happy Christmas. X
Top of the morning to ya haired, I have the same on 2 fingers in my left hand but also have it in my left foot, consultant said it periferal neuropathy either caused by (in my case) pr3 anca vasculitis or the medication, they said Pregabalin should help but I've chosen to put up with the pain instead of taking one more drug, hope this helps, get well soon.
Sorry to hear of your severe pain. Do please look into Bowen therapy. It has to be carried out by a very experience therapist (min. 10 years practising) with good reputation. I went through several until I found a right one. But if you find a good practitioner, you will see that you only need a few sessions to put you in a right place. I think there are some YouTube clips. It is incredibly simple a therapy and I nearly didn't stick with it but it really helped me for a long term. Bowen is also very good for fibromyalgia too. Hope you look into it.
I am suggesting this because adding another medication wouldn't be good for you for a long term as you are already on several. Always better to seek non medication route if possible. Good luck.
Hello, I don't have carpal tunnel problems so I can't help much there. I have been having 6 monthly infusions of rituximab for the past 6 years. I did have a reduction in the amount and severity of joint pain, improvement in the pneumonitis and vasculitis, however the last dose in April didn't seem to have any effect and I have been on prednisolone since July when my lupus flared terribly. I weaned the prednisolone only for us to have a week of heatwave conditions in late October (temp over 35°C every day) and bam! Lupus out of control again, my 2 weeks steroid free, gone!!! I am now on Baricitinib, to try and get control again. I found the rituximab reasonably easy to tolerate and effective. As lupus is constantly changing its manifestations, I guess changing meds is a way of keeping pace. I am also on methotrexate, pregabalin, clonidine folic acid and methadone for the lupus, Raynauds, Sjorgren's, Fibromyalgia, Complex Regional Pain Syndrome (CRPS) and Anti-phospholipid syndrome. I am also diabetic on insulin, have depression, anxiety and complex PTSD. If you can tolerate the rituximab and it helps control symptoms then is there a reason to change? I would have continued on with it, had it not been for my lack of response and thus increased symptoms and abnormal blood results after the last infusions in April. Although it's pretty awful during and for 24-48 hours after the infusion - I got awful nausea, headache and fatigue, it is easier than taking daily meds whether oral or injected. Also if I can have a treatment that allows me to not have to take corticosteroids, I will go with that treatment over steroids every single time! I hate all of the myriad nasty side effects that accompany steroids. Best avoided if at all possible.
Merry Christmas
Hi, thank you for taking the time to reply. A lot of what you say seems very familiar to me. I have found the rituximab has worked well, but only if I continue the maintenance steroids. Once I drop below 5 mg flares again. I wanted to wean off the steroids, but had a very bad summer with severe photo sensitivity and skin flares fatigue pain etc. Thankfully I have no major side-effects after infusion apart from fatigue for a few days, headache sometimes migraine only lasts a few days. March’s Infusion did not work so well rheumatologist decided to give me one infusion in September another two weeks later. This is a once off revert to One Infusion in April. I also take Tegratol for nocturnal epilepsy also developed high blood pressure this summer. Have tried so many different medications which cause severe reactions. Only took 1 pain killer which helped and pain eased the past 2 nights. They say I am medication sensitive. So not keen to add more meds !! Hopefully 2024 will be better for all of us with some remission.
Take care and
Very Happy Christmas to all (with some remission from our various symptoms)
Hello Haired,
It is interesting that you had 2 infusions in July but usually only have 1. My treatment with rituximab was always 2 infusions, 2 weeks apart and every 6 months. The infusion protocol meant I was 6-7hours in the day chemo unit each time. It would start with a dose of oral paracetamol and antihistamine, then an infusion of steroids then 250ml of Normal Saline then the Rituximab infusion and finally 500ml of Normal Saline again. Often we had to pause the Rituximab so I could be given an IV dose of anti nausea medication, as the nausea started after about a quarter of the Rituximab had infused. Also the infusion started very slowly with small volumes going in and then the rate increasing slowly. Unfortunately for me no matter how slowly we went the nausea always got me. One day in the chemo unit there were 4 ladies, including me, each in a recliner chair receiving various different chemo drugs, we were all feeling sick, then 1 lady vomited, then the next, then me and then the 4th. The poor nurse didn't quite know who to see to 1st. It was stereo vomiting. Once we all felt a bit better, we had a good laugh with the nurse. Being a nurse I felt for her, it's weird what you find funny when you're unwell and in a chemo unit!!!
I fully understand not wanting to take yet another medication! However if the carpal tunnel is disrupting your sleep maybe taking a small dose of pregabalin or similar would be worthwhile in the short term. If it turns out that you need a carpal tunnel release done, you could then wean the med after the surgery has been done?? Just a thought. Also with the steroids, have you tried weaning them really, really slowly? Sometimes I can wean them by dropping the doses 15mg, 10mg, 5mg, 2.5mg then 1mg and stop. This is done over 4 months or thereabouts. Other times it's been 15mg, 12.5mg, 10mg, 7.5mg, 5mg, 4mg, 3mg, 2mg and finally 1mg and this takes about 9 months if I can drop every 4 weeks. I get impatient and want to get off them more quickly. My rheumatologist has to keep reminding me that a rebound flare is not the outcome we are working towards. I'm not sure how old you are, but I am now 51 and as a result of the steroid use I have insulin dependent diabetes, osteoporosis and am overweight, with the excess weight being entirely on my torso, which is the worst place to carry it. Also in 12 months I have gone from having low blood pressure and dizzy spells to having high ish BP, high cholesterol and being diabetic, having an infected gallbladder with abnormal liver function, to having my gallbladder removed and having my liver function very slowly returning to normal. All of these have been attributed to the use of steroids over the last 30 years. I'm not saying that you should stop them, your lupus will determine that, with you and your rheumatologist. As it should be. It's just that if I could change anything it would be not looking into any and all other therapies that might have assisted in managing my lupus. I would have tried anything and everything from acupuncture to shamanic healing if it meant a few months without steroids. I fear that for me, it is now too late.
I hope that you have a pain free Christmas. Pace yourself!
Happy Christmas
Hi I'm suffering same problem, if you find any things please let me know take care
I found heat was better than cold -I used hand warmers inside a glove but ultimately had the op on both hands, six months apart. Left hand was immediate relief, right hand had residual pain for about 6 months but eventually calmed down - hope you feel better soon x
I was told I could have carpal tunnel until I had nerve conduction test, then told no it arthritis wear a splint. I spent a fortune buying different ones as I had no guidance and the ones being suggested end up not helping. I found I was worse off in the morning with hands swollen or numb fingers with pain radiating up and down arm. Rheumatologist ended up reffering me to hand therapy where a splint was made. Unfortunately didn’t help so was referred for steroid injection I’ve just had it done and it may take a few days or week to settle if it’s going to help. But what I discovered by the musculoskeletal man was, it’s the trapezium has collapsed and rubbing on the next bone! I must say while he manipulated the hands, some parts felt relief while other parts had me jumping. We are concentrating on left hand dominant first as that’s the worst but it may end up with a piece of bone being taken away, early days yet. (I’ve given up on the splints as there not working for me)
Just thought I’d mention my journey so far if you’ve not got 100% diagnosis of carpel tunnel.
You poor thing sounds awful. Luckily splints I got in casualty in 2013 with steroids for a few worked. It comes and goes but this time was very bad and lasted longer. I did have nerve tests in both hands some months ago . Right worse than left, rheumatologist said to keep wearing splints. Thankfully, feeling better last two nights.
Happy Christmas
that’s great to hear! Hope pain settles down now fora while. I can’t believe 48 hours after steroid injection I’m pain free! Feel like I have a new hand 😂 the question now is how long it’ll last but as usual, take it each day as it comes.
Happy Christmas to you too
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