I've been having numbness / pain increasingly getting worse over the last few months, it seems to kick in during the night, so It's now waking me up. I find it hard to bend my fingers. I also have pain in my hips....is this a sjorgens thing? If so how do you manage it? I've had tests, with mild carpal tunnel diagnosed, but this isn't like carpal tunnel. I am still being diagnosed , with a strong suspicion of sjorgens , ( no treatment yet) I've already been diagnosed with Fibromyalgia , by the way.
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25clai
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Thanks, I've got test results from a 2nd opinion coming back to me next week with a rheumatologist , who was pretty convinced it was sjorgens on first meeting, but I am not sure what else is going to be diagnosed, which is why I am querying this developing symptom .
1 St diagnosis was Fibromyalgia only. A very patronising 1st rheumatologist, who refused to listen, but that seems like a common experience for many on here!
Yes I have a stiff painful left hand and painful left hip joint every morning! I sleep mostly on my left side. It soon wears off as I take my morning pills asap with a breakfast circa 7am. My evening pills help me get my REM sleep so I always wake up early in pain. I am just on paracetamol and ibuprofen btw. I have not mentioned it to my GP or rheumi as It is not high on my list of problems really - I often nap during the day but then I can as I am in bed on oxygen!
Sounds like you have a lot of symptoms to juggle. Interesting that you have similar experiences with hip / hands. ( I was diagnosed with bursitis of hip last year and had 7 months of physio) , pain in hip is now getting worse again however.
I too take pills for REM sleep, but I am having to up them to get sleep. Not ideal, as I have v low blood pressure. Noticing now that my hands are swollen every am too. I am seeing a nephrologist next week. Rather fed up as it looks like I will have to take off my rings soon. My wedding ring hasn't left my hand since I got married 23 years ago.
Good to hear I am not alone, feeling really fed up at mo. The brave face is slipping. Thanks for your reply, it makes a difference!
Hi again - yep I have low BP (I have my own machine and it is typically 110/70 but has slipped to under 100 on occasion) and low body temperature too! It is as if my system is operating at a minimum level. Last Christmas I got fed up with my weight gain and not being able to wear my wedding ring and decided to tackle it scientifically! I started with NHS Choices weight loss programme recording everything I ate on an excel spreadsheet each day. I discovered that I only needed 800 calories per day to operate at this level so it was not surprising that I had put on 2 stone over the past 18 months despite not eating much. I also added in two extra dieting methods which suited me and definitely helped. Michael Mosley's 12 hour diet when you do not eat for 12 hours each day - I ate between 7am and 7pm. The other (also advocated by MM I think) was to have a couple of 'fast' days per week when I only ate 400 calories. Anyway I lost 1 stone in 5 months (slowly but surely) and am aiming to be 9st by Christmas. And I started wearing my wedding ring again in July!
My BP is at best 110 over 70 too, I have a lot of times where I dip a lot. I've had some blackouts too. I have noticed that my metabolism has slowed down, but I am struggling with food (digestive problems under diagnosis) and have lost weight from the norm. I think my swollen hands in the am, must be down to kidney function being erratic or similar. I can see the benefit of keeping a close eye on it all when stomach improved. You have done very well with being so disciplined, to keep weight in check, really hard when you've got so many health problems to juggle. Doesn't the v low calorie intake affect your bp? Do you just up the fluids to keep blood pressure up on the lean days?
Actually I do fine - yes re fluids of course but I do so little that my energy needs are rock bottom! No evidence that BP is linked to calorie intake for me.
I have similar probs, hard to know what ones are sjogren connected, i have sore left hip with bursitus, pains and swelling in hands and feet and pins and needle and pain in right arm. As jakiblu said i would check with rheumy doc or nurse x
Yes, I had all of these symptoms before being diagnosed with lupus and Sjogrens. I'm also hypothyroid. Not sure which meds helped relieve the symptoms but I'm on levothyroxine and plaquenil.
Hi there, same with the swollen and stiff hands. Have hip pain but only when I wear tight jeans...which I find odd. The hands are better when I don't have foods from the nightshade family...potatoes, tomatoes, capsicum, etc...which of course I love and being coeliac potatoes were one of my staples. The hands are better after a shower but often can't close my hand fully and a couple of the fingers feel they are going to dislocate when they are bad and I try to close them into a fist. Feet are also stiff and saw I the morning too.
I also have Fibromyalgia but have been getting more pains when I fell-asleep some times I feel sick with the throbbing pains. I am just thankful for maybe one good day a week.
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