Hello, this is the first time I have posted a question. I have spinal problems and have had a lot of surgery in the past but suffer with chronic pain. I also have Raynauds that mostly affects my feet. For a many years I have had dry eyes diagnosed by a test and difficulty swallowing because of a dry mouth. I thought the dry mouth was caused by Amlodipine given to me to help Chronic Pain. I have been off the Amlodipine for over a year but still have my dry mouth that has got worse over the last year. I recently had a blood test for Sjorgrens. I do not have the results yet. I looked the blood test up on the internet and it said that the test only shows positive in 60 per cent of people who have Sjorgrens. Has anyone else had this blood test for Sjorgrens? What was their results? I notice everyone seems to see a Rhumatologist. I have severe Arthritis but blood tests do not show for RArthritis so I have been diagnosed with Ostioarthritis. I have an Artificial knee joint and need another. I have Arthritis in all of my joints I also get severe muscle spasm in my back neck and shoulders and see a Pain management specialist. Any advice would be most welcome.
Best Wishes
Jessie122
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Jessie122
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It seems to me that you need to be referred to a rheumatologist about your Raynaud's and your Sjorgrens. I believe that arthritis and scleroderma are related autoimmune diseases. You seem to have a lot to put up with. Welcome to our site.
Oh wow you sound like you are in so much pain and I can only empathise with you. Regarding the Sjorgens, I've had a blood test done but to no avail, nothing showed up but I have so many symptoms for sjorgens including, dry mouth, dry eyes, terrible back pain and now weakness in both of my arms and legs and I've been like this for years. Also running back and forth to the loo about 6-7 times per night, you'd think someone would've cottoned on by now huh. Anyway I am now going to request a RA referral through my GP as suggested on this site and I hope you do to if you haven''t already.
I wish you well and just keep going back to the doctors over and over like I've done for years and years. I am fed up with going to my GP but it's only now that I'm getting somewhere so don't give up ok
Keep me informed as to how you get on and perhaps we can share tips and ideas and information to ease all our lives on here.
Hello Giny, it sounds as you are also having trouble.I am sorry life is a pain for you. I saw my GP today and without any prompting she asked if she could refer me to a Rhumatologist. The blood test was not back but she noticed how dry my mouth was. I could hardly speak and she asked to see inside my mouth and said it was very dry. Another GP in my practice did the dry eye test and diagnosed dry eyes he gave me artificial tears. After going through them all Hypermellose seems to suit me the best although I have to use then frequently. I have been using Biotene mouthwash and the Gel. It helps stop the plaque building up on my teeth. I also drink a lot of water day and night and seem to be up and down to the loo all night. Although it is usually available on NHS prescription there seems to be a trouble with supplies of Biotene so I have been buying it on Amazon. The Pharmascist has been told that it will be back in supply at the end of August.
May I suggest that you push to see a Rheumatologist who has experience of Sjogrens, Raynauds and perhaps Scleroderma. I was diagnosed with Sjogrens by the opthamologist when I went to renew my glasses prescription, subsequently confirmed by an eye specialist but only recently, and via a referral by my dentist to the Eastman Dental Hospital in London, an ultrasound imaging test of my salivary glands has confirmed they are damaged irreversibly due to Sjogrens.
Similar symptoms to yours overall as I also have Scleroderma and osteoarthritis in multiple joints and am helped by the Pain Clinic at my local hospital for this.
Early Rheumatologist referral, and diagnosis, especially someone who has Sjogrens experience, would set the wheels in motion to maybe get a handle on your Sjogrens before any damage is done.
Hello Suze, Thank you for your reply. My bood test for Sjogrens was negative. However 40 per cent of people with a negative blood test have Sjogrens. My Gp has referred me to a Rhumatologist and I am waiting for an appointment.
I am on a lot of medication and that could be agrevating or causing the very dry mouth. However I have to take the medication but I am trying to find alternatives that do the job of relieving pain and keeping blood pressure down, Raynauds under some control and also help Periperal Neuropathy.
My tongue was so red this weekend I could not eat a thing. I have some dry mouth products that have helped. A dry mouth toothpaste, mouthwash, and a gel. I caould not use ordinary toothpaste as it stung my mouth so much.
I see my Dental Hygenist regularly and am seeing my dentist again soon.
I do not live near a Dental Hospital but we do have an Orthodontic Department at our local hospital.
It is my fault that I have not been refered sooner I waited until things got to much to cope with. I feel like a hypochondriac with all these problems. It is good to hear from people who have similar problems.
It is interesting to read all the comments and thought perhaps I could make some personal observations and perhaps pose a question or two.
I have Progressive MS, Raynauds and Osteoperosis. Swollowing is a problem and I can no longer eat dry food without moisture of some sort. I love blueberries and these help between bites. I tried a gel spray when talking was hard and it did have a limited use but is not pleasant and more than a little awkward to have to carry it around. I can also drip saliva when leaning forward which is a bit odd.
I have only seen my GP who diagnosed Raynauds. I take Adipine everyday and know this helps because my feet look dead when I am late with one of the two dose taken.
I also have some spongy moist bits on my right foot and my first question is - is this Raynauds or something else?
My hands and feet are frequently cold and when the temperature drops I have a lot of pain in all limbs, in fact my body cannot tolerate the cold. Although my hands can also be numb and go a raspberry shade when placed in hot water they function well. My main problem is my feet - they often look like the toes belong to a corpse, are very painful when they heat up with some toes taking a good 10 minutes to get to a more normal shade. The base of the toes on my right foot, all the way across is mostly white even with Adipine with the viens being hardly visible and a pale puce colour. Any pressure in this area is painful. Is this down to the MS or is it Raynauds, or both?
Not much is mentioned about feet,are my feet affected more because my mobility is limited?
Any observations or similar experiences gratefully received.
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