A ray of hope

Allergies, blood and immune system
1

I'll have to be a bit cryptic if I'm to avoid this post being taken down, but I think everyone will know what I'm talking about.

It's true that Sjogren's affects all of us in different ways, and some more seriously than others. As I've said in other posts on these boards, some people get very unlucky, but for the majority it's not a life-threatening, or even seriously life-altering, disease. Most people manage to live with it, some very successfully indeed.

So... it's that time of year again, isn't it? Over most of Europe, and probably further afield, we're all having our TV schedules disrupted yet again by that seemingly endless tennis tournament in a south-western suburb of London. (Like I said - cryptic.)

And as I'm sure we all know by now, a prominent 37-year-old Sjogren's sufferer has just gone through to her 9th women's singles final, having already won it 5 times. She's won a total of 49 of her 81 world-class singles matches, as well as numerous doubles, plus 4 Olympic gold medals.

Just in case you were wondering, this isn't the VW fan club. This lady has had advantages in life that most of us haven't, not least the fact that she's 6ft 1in (1.83) which has undoubtedly helped in her chosen sport. She's also been able to afford the kind of top-class medical treatment that eludes most of us.

However, none of this detracts from the fact that she's been able to live an extremely successful life in spite of receiving a diagnosis of SS at the age of only 31, which would suggest that she's been quite badly affected. (In general, SS tends to be more severe the earlier it occurs.)

I can't say I'll be glued to my TV on Saturday afternoon. However, I think we can all take encouragement from this example of how a Sjogrens diagnosis doesn't have to be the end of the world.

(I'll be saving this one before I hit the "post" button... Just in case!)

2

Couldnt agree more! Before anyone thinks her money was the answer, rememeber that she did disappear from the scene for some years after her diagnosis which we can assume was to take time to learn to live with SS and try out any number of meds/techniquesas she larnt how to manage and later, to thrive and be weher she is today. I salute her and she is a great encouragemnet to us all. In my early years with SS as i lived a very full and busy life with 3 young children etc i did not tell anyone my diagnosis. One day my husband asked me to tell a friend who had a newly-diagnosed daughetr and was devastated. He said she needed to hear and see how well life can go on even with SS. It was a lesson to me. Most people on this planet live with challenges we know nothing about, we only see their happy side. VW reminds our group tespecially that life is still worth living, worth living very well, and that we all sometimes need to take time to take stock and get our lives back into the best order thats' possible for each of us.

3

Very well said Lilly☺️

4

Thank you for that Jennifer. I hope this entire thread will not be taken down because of the small, but vocal, number of negative activists it will inevitably attract.

While understanding that SS can be extremely serious and life-changing for a minority of sufferers (with whom I sympathise) I think it's very important to set out a balancing opinion to avoid depressing new sufferers unduly. That surely has to be one of the aims of a site like this one, as well as providing a forum for the more seriously affected to get the support they need.

5

Thank you Brenda. I hope you're not suffering too badly from your Sjogren's symptoms.

6

I have to say I enjoyed reading your thread so much lily and also Jennifer's thread too, I'm sorry to say Ive not got a good way of putting my thoughts into text  but I must agree whole heartedly with your threads. 

          

7

Holding my own lily, at the moment having more good days than bad and determined to make the most of it, I'm a huge believer in positive thinking and though I completely understand that it's not easy when every joint in your body aches every orifice is sore from dryness and you feel so down that you can't be bothered to get out of bed,hope is what keeps us going, hope that it will get better and articles like yours do indeed give us a ray of hope😊

8

Yes I can only surmise what it is like to be one of the 25-50% of SS sufferers who do not have neurological, pulmonary, renal and other extraorgan involvement. However severe dry eye, dry mouth and other glandular dryness along with fatigue is certainly no fun either. I wonder how VW copes with the dry mouth while playing often in such warm conditions. She must have a lot of mental toughness.

 

9

Hi Megheart,

I think it probably depends on how severely SS affects the 50-75% who do have the problems you mention. I also suspect this estimate refers to those who'll eventually develop these problems in the life-long course of the disease, rather than the unfortunate few who get them all at once.

Many of us, like me, have neurological problems - in the form of peripheral neuropathy in my case - that aren't much more than a nuisance and don't advance. Also, I think organ problems tend to develop at a later, rather than earlier, stage in most sufferers. In my case, the first organ involvement only came about 10 years after the onset of SS symptoms. As this only affected my thyroid gland, and is very easily managed with regular blood tests and calibrated doses of thyroxine, I think it hardly counts. My lung involvement is admittedly more serious - potentially anyway - but it took 20 years to develop.

I'm therefore guessing that VW, having been diagnosed only 6 years ago, would still be in the early stages of the condition, where it would be relatively easy to manage, especially for someone with a high level of fitness and self-discipline. In spite of the creeping tendon involvement and a degree of breathlessness, I still wouldn't describe myself as disabled 22 years from the onset, and I was an only-moderately fit 51-year-old when it all started. And VW might not even get a dry mouth. Not all of us do. Dry mouth was my first SS symptom, and was quite severe for the first year, but has hardly troubled me since then.

I do, however, have a concern that she might push herself too hard and cause the disease to advance more rapidly than it would otherwise have done. Prolonged over-exertion tends to weaken the immune system in professional athletes, who actually have a higher risk of developing various cancers in their middle years. I suppose this could be seen as an advantage in someone with an over-active immune system, but I'm not so sure it works that way. Seems to me that she should be thinking about retiring from the grand-slam circuit, especially as she's just lost in the current finals. But then, knowing her admirable grit and determination, I suspect she'll want to go out on a high!

On the other hand, diseases far more serious than SS don't always follow their expected course if the sufferer is sufficiently determined to stay alive. Take Stephen H, for example (the eminent physicist). In spite of having long since lost all his physical faculties, he's still working and must have broken all medical records after surviving MND/ALS for 55 years. (And as far as I'm aware, no one ever claimed he'd never had it in the first place!)

I wouldn't say I was VW's No. 1 fan, but I wish her all the best, and still think she's a good ambassador for our condition, and a reassuring example to nervous new sufferers.

10

yes VW disappeared for i think about 4 yrs and has since been getting stronger and more victorious in her games...she said she suffered from tendons and fatigue so its increddible how she has fought back...i have restarted using the treadmill (only about 30 mins at a 3.5 miles per hour)and mentally at least feel so much better. I also know that i have to accept my limitations at the moment where every tendon seems to to be affected in this flare up..i cant lift my 9 month old grandson who weighs 10kg) but i know this flare up will not last forever.

btw lily  as cazeraz says i too enjoy reading your posts   

11

That's interesting shaq, I didn't know she suffered specifically with her tendons. That makes her recovery even more impressive, doesn't it? I'm glad you're having a little success with exercise. You (and VW of course) have inspired me to work a little harder on the tendons in my arms now. I'm able to walk for an hour most days as well as doing a 30-min home routine to keep my legs strong but the tendinitis in my arms is still my main problem.

I have to say, however, that compared to the terrible pains in my upper arms, elbows and wrists that I was experiencing two years ago, I really shouldn't be complaining about how things are now. Back then I wouldn't have been able to lift 10kg either - I couldn't even peel a potato or clean my teeth, and one night I had to sleep in my jeans! They were the skinny type that have to be firmly pulled or pushed down over your feet to get out of them. I'd managed to pull them on OK in the morning, but by that evening the pain in my tendons was so bad, I couldn't get the darned things off! As I live alone, I had no option but to keep them on. (Fortunately it was a cold winter night.) I managed to get out of them the following morning, but was reduced to wearing skirts or baggy pants for the duration.

I still have quite a lot of tendon pain, but I'm happy to report that I can now risk wearing skinny jeans again, as well as carry out most normal household tasks, so there's obviously been a high degree of remission. Don't lose heart!

12

Yes if VW can do it so can we...albeit she almost 30 years younger than me

​i tried to do without the painkillers (including solpadeine) , and the gels and sprays and just taking plaquenil for 1 night...but i woke up in such agony....that decided to resume my regime of all meds .....and i feel sooo much better in comparision....as u say... couldn't even brush my hair or get undressed or dressed without hubby (thank god he is so understanding) ..but back on meds and not insisting on doing the dishes (no dishwater)  or other work involving arms and fingers....i feel better...though still cant open tins,jars or boxes or use a knife or get off a recliner ....but i am getting there though do have to take panadol Extra (has caffeine) to relieve pain at work  

​I have also started doing leg excercises to build up muscle and considering adding ankle weights...coz at moment once i get down cant get up without help

​and all this rubbish has happened since Dec when this flare started.

 

13

Oh shaq, I sympathise completely. It's a pain when you're helpless, isn't it? It made me more aware of the interconnectedness of bits of my body - like that old "Dry Bones" song.

When I had my tendinitis flare-up, the thumb-wrist tendon (can't remember what it's called) on my left hand was moderately affected, reducing my grip, but my right hand wasn't directly affected at all. As I'm right-handed that might sound like a stroke of luck. But my right elbow was very badly hit, which put the hand almost entirely out of action. The slightest pulling, pushing or gripping movement of my fingers caused terrible stabbing pains in my elbow, often making me drop things. I couldn't even peel a potato. To make matters worse, I coincidentally got a trapped nerve in my neck in the middle of the flare-up - which my doctor said wasn't SS-related - which caused neuralgia down my left arm.

The good news is that it eventually wore off. The neck problem cleared up after a month of wearing a foam collar. I think the acute phase of tendinitis lasted about six months, then it took another six months or so for things to subside.

I think the recent sudden appearance of tendinitis in my left leg (where I've never had it before) was partly due to my having stopped all my exercises and reduced my walking during the first two months of this year, when I was suffering from positional vertigo. That's the one where the crystals in your inner ear get displaced and start sending wrong information to your brain about the position of your head. As the slightest wrong movement of my head could send the world into a spin and throw me off my feet, I really had to draw in my horns for the duration. That may or may not have been SS-related, btw. I'm a bit suspicious as it's the second time I've had it, though the first time was more than 25 years ago, in pre-SS days and in the other ear. It has a high incidence in the general population anyway, but I've read that SS and related AI conditions can predispose to it.

It finally got fixed in a 20-minute session with a really great vestibular physiotherapist (I got lucky there - I've learned from the vertigo boards that many don't) but then I had to start from scratch in building up my fitness and mobility again. I'm older than you, and even two months of relative immobility can quickly take its toll on our muscle strength beyond a certain age. I realised this the day I got down on my hands and knees for something in the empty space in the middle of the living room and found myself totally unable to get up. I had to crawl on all fours to one of the couches so I could haul myself up on it. These things are quite funny after the event, but less so at the time, aren't they?

Once again, the good news is that this too is reversible. I started exercising again three months ago, and though I haven't been able to do as much as I'd like because of the tendon pain in my leg, my muscle strength has increased noticeably already. I'm sure that with your level of determination you too will get back to a better place. But be careful not to overdo it.

14

Was it de Quervain's Tenosynovitis?

15

I don't know. I only saw my GP about it and he just said tendinitis. I haven't seen a rheumatologist for 12 years now, as I'm not prepared to have a lip biopsy or start on DMARDs or immunosuppressants at this point.

Cold packs helped the pain a lot, which points to tendon involvement, and it cleared up after a few months. However, I notice that the lower joint of my thumb, down near the wrist, is now enlarged and a bit knobbly, with some crepitation when I move it, so I suspect osteoarthritis may have played its part too. The joys of old age! On the other hand, I now have full movement in the joint again and it's pain-free. It was actually the right elbow that was the most disabling, but the doctor said that was tendinitis too. Ditto for the pains in both upper arms and now my left leg.

I'm inclined to think he's right, as cold packs help all these pains, but I'm starting to think it might be useful to see a rheumatologist anyway, just to get a second opinion on all this stuff - but without mentioning SS!

16

 did overdo on the treadmill swinging my arms around and trying to exercise them albeit without weights yet     and paying the price for it

​but after a couple of days i will resume... I too have a very stiff neck and cant turn my head left or right without pain and often  a 'cracking' noise..the rheumatolgist put this down maybe a pinched nerve and gave me lyrica to take....which i have taken for the past week or so...pain has gone from hell to just painful....also have to turn my neck as i drive to and from work so have to grit my teeth .. 

​i will try the cold packs ....never thought of that

and we shall perservere

​a blood test may show if you have SS..i didnt bother to do the lip biopsy...blood test was positive...though some others have said thiers was negative 

17

Hi shaq,

I was just wondering how you were as we hadn't heard from you for a couple of weeks. I hope no news is good news. Is the pain improving at all?

18

Hi Lily

​Stopped the excercise regime completely as i was taking plaquenil, celebrex , lyrica and solpadeine (last 3 as pain relief) I was experiencing vivid bizarre dreams/nighmares so put it down to all meds . i have now stopped lyrica and solpadeine  and had to resume celebrex couple of days ago ...couldnt stand the pain

​The fingers have lost most of swelling as have wrists but palm still has raised tendons and even steering wheel of car is uncomfortable to hold and if bottles, jars and tupperware type containers are tightly closed..I cant open them...and also now extremely sensitive to pain to all types of pain 

​Had stopped all inflammatory gels/creams but had to resume....i will try stopping them again by end of week.

​i think all this neck,shoulder, upper arm pain has stemmed from injured cervical vertebrae ...and am going to try and book to see an ortho specialist ....at this stage i am clutching at straws ....however my GERD seems to have eased off a bit....maybe the plaqeunil is having an effect on it (gastroenterlogist thinks my SS and my GERD (esophogitis,gastritis.all connected...even had a colonscopy 2 years ago after lab report from endoscopy and biopsies showed only GERD, Barretts ,esophagitis, gastritis and no other parasites ,bacteria or IBD)  but fecal calprotectin was sky high ....colonoscopy and biospsies showed all normal...So gastro in hindsight has put it down to SS

​so if ortho man says nothing really wrong with Cervical vertebrae (and puts it down to age i dont how i will go about trying to sort it out....cant keep taking pain killers indefinitely.

​

 

19

So sorry to hear you're suffering like this, shaq. I know just how miserable it is. On the bright side, at least you have a husband on hand to open jars etc. During the 6-12 months I was going through this one I had to keep running to my neighbours for services like this.

Sounds like you have some kind of inflammatory bowel disease, which I'm sure is SS related - or even the cause of your SS. I hope you can get help for this.

Just a thought: I don't know how things work where you are, but here in Europe a neurologist would normally be the first port of call for cervical spine disorders, and not an orthopaedic specialist.

20

Thanks for that info. Lily.  I will try and get appointment with a neurologist.