What next
Posted , 4 users are following.
Just wanting to know with others who have this 'condition' how it evolves. I had BPPV about 8 years ago around the time being diagnosed with Sjogrens and it comes around periodically. My blood tests indicate Sjogrens and I also have fibromyalgia (seems to be the thing with sjogrens), however I don't have dry eyes as such or dry mouth. What I do have is lots of aches and pains everywhere. Some days I wake up with teeth aching, jaw and neck pain which develops into headache. Everyday around 2ish I get a constant throbbing behind the right eye which lasts for about 4-5 hours. If I work more than 50 hours fortnight I get what is like a chest infection/asthma which makes me flat, voice goes and become quite short of breath. This may last for a week, sometimes up to 2 weeks, I also have osteo arthritis throughout my body. I take prescription Plaquenil and Endep(Amitryptaline) and take 4grams fishoil daily, grapeseed tablet twice daily, tumeric tablet daily, molybdenum/zinc daily, vitamin C powder twice daily, caclium/vit D daily plus magnesium powder. Also vit B12 spray for energy as often as I want a day. Most days are quite bearable and can do heaps but when I crash, it seems to be in a heap.
I am under a specialist for both rheumatoid and another for respiratory and one for eyes. Respiratory believe it to be part of sjogrens but the rheumatoid doesn't totally think so. This has been ongoing for 2years like this. Am getting so frustrated. I really believe that not all specialists know what they are treating these days.
Any thoughts would be appreciated
0 likes, 6 replies
estelle44124 jb73193
Posted
certainly the medics are a mixed bunch and I moved to a rheumatologist the BSSA told me was good with Sjorgrens. (UK based). Saw her or a check up this week to find out that the new medication I am taking now for anxiety (sick husband) is bad for a dry mouth!! So I am going to see the doc about a change as my dry mouth at night has been horrendous. She's also getting x-rays done of my hands as she was worried about them and taking a raft of blood tests too. EYES; you could be photosensitive. I carry overglasses with me (very reasonable online) and they just pop over prescription ones if you wear specs. They have side panels to help with draughts. Aircon and heating makes eyes worse. I don't need to wear them all the time but harsh/bright /sun light does affect them badly. Aches and pains standard trouble - as is osteo arthritis. Do take rests if you feel you need them. My fatigue kicks in late in day so I stop anything that needs 'brain' power from 1600 hrs onwards. I'm now 74 but wasn't diagnosed till seven years ago. At that point all sorts of ills from over the years fell into place. Good luck x
jb73193 estelle44124
Posted
Thank you for your support. It sounds like this doctor is on the ball for you. Let's hope that there is somethin g that can be done to assist in making you feel more comfortable.
christine26761 jb73193
Posted
Hiya jb, I also have SS, Fibro, Asthma and arthritis...yes it's very frustrating, they are all autoimmune conditions..SS and Fibro seem to overlap for sure...we do get many viruses that are going around too..you seem to be taking most of what others on this blog are taking..I was advised to take Magnesium spray, they call it oil but it isn't...I spay it on to infected area and rub it In the parts -anyway here on the body, if I can't reach with the spray I just spray it on my hand then rub it into affected are..it's really great.,I take Magnesium tablets too always have..I take double the recommended amount, I do that with most of my natural tabs., my doc said for it to work I needed to work, a nurse, naturals th friends told me to try the sorry, couldn't believe the relief..magnesium is only Epsom salts so if you can get into a bath..I can't..it would do you wonders to soak in it..the spray is fairly cheap too...it's in most chemists..be bkessed job, have a lovely day.😍💐
jb73193 christine26761
Posted
It is not fun having these conditions. I too use magnesium both in the powder to drink and cream to help with the pain. Most days it helps, just get miserable when the flare ups occur. And thank you for your support, and you have a great day
aitarg35939 jb73193
Posted
Hi JB
One of the hard things to keep in mind is that the 100% healthy human is nowhere near to being completely understood by science & the medical profession, thus the ailing body is far, far from being understood. When the ailments afflict only or mostly women we're much further out because (male) scientific researchers would rather play with themselves than figure out something for women ,,, with full apologies to the men who suffer Sjogren's.
I've not met the pulmonologist who wants to blame SS for lung problems but then I have COPD & other lung problems. Still, docs from different specialties often disagree. Sometimes we simply have to call them out on it, ask them to confer amongst themselves & get back to us.If you've found a rheumo who gives some respect to SS, counting yourself very lucky.
You didn't mention what kind of work you do or the condition of the worksite. If you're coming down with something respiratory, either or both could play a big role. But if things only go off when you work those 50 in a 2 week period, can you possibly work a little less?
As to evolution, I'm in my 60s and think I've had SS all my life or definitely since I was 18. Thirst was the predominant symptom by 18 but there were some others in childhood. Because I grew up outdoors, riding horses, climbing trees, running wild, no one was shocked when it was diagnosed as having arthritis in one knee when I was 16. Now I would ask more questions, but that's probably how many of us got diagnosed long ago. By age 24 working on a doctorate, I couldn't make it this ought an hour class without leaving for a sip of water. A friend who suffered from another AI disease unbeknownst to me) suggested that I start chewing half a piece of gum, a trick I still use.
I had a bad accident in my 30s. My super ortho surgeon was asked to explain why I was still in so much pain after 9 months of physical therapy. After noting that everyone is different, he said he didn't understand & couldn't explain. Well, it was SS!
A few years later I complained about dry mouth to my ENTIRE & was diagnosed with SS. My eyes gradually got dryer. I woke up one morning with the proverbial ghost scratch on my cornea, and have spent a fortune on eye drops of increasing viscosity ever since. I use evoxac/civemeline and it helps with mucus membranes, and I take a fair amount of 3 kinds of non-narcotic pain pills every single day. Some days I can't walk for all the pain, but those days are much more rare now than in the 10 years after the accident.
I have some small nerve peripheral neuropathy but fortunately gabapentin helps me with that. I am now told I have lupus. No one knows how long I've had it since I haven't been tested before. I'm still in shock on that one. I have to find a new rheumo!
I consider myself very fortunate compared to several women I know who almost never feel good enough to leave home. While I may get remission on the neuropathy, I've never had onefor dry mouth/eyes. I can only dream of that one.
jb73193 aitarg35939
Posted
OMG, you have made me feel so much better when I compare my problems to yours. I am a nurse and in my 50's. The workload is not that bad, I just have to remember to try to cut my hours to 50 per fortnight and not 70. I have tried going to what is called 'an alternative therapist' who was a gp speicialising in fibro. Oh, that's right, also have IBS. Was told to cut sugar right down, no soy products, no dairy, no gluten for 5 weeks and then blood tests. Have continued to follow this somewhat but still like my lactose free milk. I have become a part time paleo eater as I can't see me being completely paleo. This has all helped me over time but it is when the flare ups happen that it gets you down. I sincerely wish you luck with your future prognosis and hope for your sake too, that you do get your remission.