A cold Kiwi with Raynaud's and now Sjogren's syndrome, needs help..?

[MikefromsouthNZ]

Hi. I live at the very South of New Zealand and I have Raynaud's in my fingers, nose, lips, but moreso in my feet and toes.. I was diagnosed with Raynaud's in 2009 but I have been bitterly cold since 2006..

In the summer I find it helps my nose and lips but I still need to wear thermal gloves with gardening gloves over-top,,, My feet and toes are frozen 24/7, with numbness all year too.. Even wearing Merino woolly socks with fur-skin boot liners inside my thick Sheepskin boots really doesn't help much..

But my immediate new concern is I have Sjogren's syndrome and real bad in my eyes.. Do moisture chamber glasses or goggles really help keep eyes more comfortable, as I also wear prescription lenses as well? I'm also light sensitive too and need to wear good rap around sunnies to cut down any glare, as TV is too bright to see now.. My eyes get blurred and I'm concerned of long term prognosis with poor eyesight.

Can anyone help with good support and knowledge of the best way to help keep my eyes more comfortable, plus what works well for sensible eye-wear...? Thanks for any support and good info.. Mike

[marnie52]

Hi Mike,

Here are a few things I have found helps. There may be something here you have not already tried. I have Sjs and also get migraines from glare.

I expect the doctors have told you to use eye drops frequently - you can't overdose on them so even every ten mins or so is ok when they really bad. You can get different strengths and viscosities so experiment.

I use wrap around sunglasses from the anti cancer council and also put on a solid peak (like tennis players put on their heads to shade their eyes, but not see through). This cuts out a lot of glare from seeing excess sky.

At home, turn the tv screen brightness down as far as you can without upsetting other viewers. Adjust your computer screen the same and if you have themes for Windows, choose a theme that is soothing - experiment with different colour text on backgrounds until you find the best one for you.

Always position your chair at home so you have the windows behind you and when you are talking to someone ensure they are not sitting in front of windows.

Keep a bowl of water near you to increase the humidity especially when using heating or cooling that dries the atmosphere. Alternatively use a humidifier in the room.

We have also replaced the insect mesh in flyscreens on the windows with shade cloth. It still keeps the insects out but also dramatically reduces the heat and glare (although this is probably more practical here in Australia than there).

As far your poor feet are concerned, the old kings of England used to train Cavalier King Charles Spaniels to lie on their feet to keep them warm -mine sprawls herself across the keys of my laptop to keep HERSELF warm (modern technology has a lot to answer for LOL)

Good luck Mike, hope you get some comfort soon.

[agypsy]

Speak to your specialist about Punctal plugs for your eyes, they block the tear ducts and help retain a little moisture. I found that my vision improved greatly and I am a lot less light sensitive, I can now use the computer and watch tv again and drive. I also have prescription glasses and wear sun glasses when out, but I keep up the moisture with regular (every hour or so) use of Bion tears - for me the only drops that work.

Good luck.

[Butterfly54]

Hello Mike,I`m from the U.K and along with SS and fibromyalgia,I have for many many years suffered Reynouds severly as your`s sound.

We don`t get that hot a weather think we are alike in that way climate wise.

I am on a drug called Nefepadine for reynouds,worth asking your doctor.it helps a bit.

Hugs Butterfly xxx

[MikefromsouthNZ in reply to Butterfly54]

HI BUTTERFLY

WELL FUNNELY ENOUGH, I WAS STARTED ON NEFEPADINE THIS WEEK.. I HAVEN'T REALLY HAD ANY RAYNAUD'S RELIEF JUST YET, BUT IT IS VERY COMFORTING TO HEAR THIS MEDICATION WORKS WELL FOR YOU.. I TOO BELIEVE WE SHEAR SIMILAR WEATHER, AND I DO APPRECIATE YOUR FRIENDLY ADVICE. I TOO HAVE FIBROMYALGIA, AND I DO STRUGGLE MOST DAYS, AS I GET FIBRO FOG REAL BAD, PLUS COPING WITH CONTINUAL FATIGUE EACH DAY, IS A REAL DRAG ON MY SYSTEM, AS WELL...

THE FIRST REPLY TO MY POST SUGGESTED A DOG COULD LAY ON MY FEET AND KEEP THEM WARM.. FROM OFF A FARMING FAMILY, I KNOW HOW WARMING A DOG CAN BE ON A COLD FROSTY MORNING... AS A YOUNG LAD, I OFTEN PUT MY COLD HANDS UNDER THE BALLY OF OUR OLD SHEEP DOG, AND WARM THEM UP AS I RUBBED HIS WARM BALLY..

I HAD HOPED TO GET A HELPING AID DOG, JUST TO BE THERE TO HELP PICK-UP THINGS I OFTEN DROP ONTO THE FLOOR.. I WAS NEEDING A STRONGER DOG, AS TO PULL ME ACROSS THE BUSY STREETS AND TO STIFFEN THERE BODY, SO I COULD USE THEM TO HELP ME TO GET BACK INTO MY WHEELCHAIR... THEY ARE SPECIALLY TRAINED TO YOUR PARTICULAR NEEDS.. BUT AS I HAVE ASTHMA AND MY DEAR WIFE HAS NOW GOT TERMINAL CANCER AND STRUGGLING TO BREATHE, A DOG IS THE LAST THING SHE COULD COPE WITH RIGHT NOW... BUT I DO APPRECIATE HER FRIENDLY ADVICE.. AS I'D LOVE TO HAVE A DOG LAYING OVER MY FROZEN FEET RIGHT NOW..

THANKS AGAIN FOR YOUR HELP AND ADVICE, ALL MUCH APPRECIATED INDEED. MIKE

[cheryl_av]

Hi Mike from NZ

I wear a set of tranquileyes goggles at night that are quite helpful you can get them from the dry eyes shop online also from the sjogrens foundation.I also use perserative free gel in my eyes at night before putting on the goggles.I too have Raynauds yes I tend to feel it in winter but not like you as I am in Queensland AUST but thinking of moving to Tasmania as I find the humidity here in summer a killer with my fatigue.

keep safe and good luck

[MikefromsouthNZ in reply to cheryl_av]

HI, THANKS FOR THIS INFORMATION AS I AM KINDA CLUTCHING AT STRAWS, RIGHT NOW.

I HAVEN'T BEEN SO DRY AT NIGHT, AS OUR TEMP HERE AT NIGHT GETS AWFUL COLD, AS MY FEET I ELEVATE THEM OVER NIGHT.. I KNOW MY EYES ARE VERY STRAINED AND TIRED AT NIGHT, SO I REALLY DON'T WATCH MUCH TV, BUT JUST SIT CLOSE TO MY WIFE, AND CLOSE MY EYES AS I LISTEN TO WHAT'S HAPPENING INSTEAD.. I HAVE BEEN USING A WARM WET WASHCLOTH, TO FOLD AND PLACE OVER MY EYES, AT THIS TIME NOW ALSO.. IT SEEMS TO SOOTHE THE HEAT AND COOL THE BURNING SENSATION I GET ALL DAY.. CAN'T WAIT TO I SEE THE EYE DOCTOR AT THE 30 APRIL, AS I HAVE A STRONG FEELING HE WILL TRY SOMETHING STRAIGHT AWAY, AS I CAN'T CARRY ON THIS WAY MUCH LONGER...

I DO HAVE A WONDERFUL ELECTRIC UNDER BLANKET, AND IT HAS TWO SEPARATE SETTINGS. ONE FOR BODY HEAT AND THE OTHERIS JUST FANTASTIC TO KEEP MY FEET FROM SO BEING SO PAINFUL, WITH THE WARMER FEET SETTINGS..

THANKS AGAIN FOR YOUR HELPFUL ADVICE AND I DO APPRECIATE YOUR SUPPORT... MIKE

[MikefromsouthNZ]

HI AND THANKS HEAPS FOR BOTH YOUR HELP AND SUPPORT.

AT PRESENT I HAVE MY COMPUTER SCREEN ON BLACK, WITH YELLOW TEXT, AS I FIND THIS AN EASIER COLOUR TO LOOK AT.. I AM SUPPOSED TO BE GETTING ANOTHER, BIGGER AND MORE FASTER COMPUTER SOON, AS I HAVE POOR SPEECH AND HEARING, SO THE NEW COMPUTER WILL GIVE ME BETTER ACCESS TO USE A VIDEO LINK TO A SPEECH RELAY ASSISTANT, TO HELP THE PERSON I'M CALLING ON THE PHONE..

YOU MAY BE QUITE PUZZLED ABOUT MY ABILITY TO TYPE THIS MUCH TEXT, BUT I'M USING SPECIAL SOFTWARE, TO AID MY ABILITY TO TYPE, FAR EASIER AND FASTER, BUT BECAUSE OF MY BLURRY EYES, I CAN'T SEE

THE TEXT I'M TYPING, SO IT'S ALL VIA AUDIO FEEDBACK, SO PLEASE FORGIVE MY MISTAKES, AS I KNOW THIS MAY BE DIFFICULT TO READ.......

I WEAR PRESCRIPTION PROGRESSIVE LENSES, AND MY SUNGLASSES ARE AN OLDER PRESCRIPTION RAP AROUND TYPE CALLED, BULL DOG.. I'M WEARING THEM ALL THE TIME NOW, AS MY OTHER GLASSES ARE ONLY A LITE TINT RED, TO HELP MY DYSLEXIA AND AID ME TO READ BETTER AS WELL.. HOPING TO POSSIBLY GET REAL DARKER SUNNIES AS FIT-OVERS, AND CUT-OUT THE GLARE..

TV IS NOT MUCH OF A CONCERN, AS I HAVEN'T BEEN WATCHING IT MUCH LATELY, BUT WE DO HAVE AN AUTO LIGHT SENSOR ON THE TV, SO IT ADJUSTS THE BRIGHTNESS AS THE LIGHT IN THE ROOM IS QUITE DULL, SO TV IS DULL TOO.

I AM USING A BRAND OF EYE LUBE CALLED POLY GEL.. THEY ARE VERY VISCOUS AND STAY ON THE EYE SURFACE LONGER.. I'VE TRIED ALL DIFFERENT EYE LUBE'S, REFRESH DROPS, EYE WASHES AND A NEW BRAND THAT JUST CAME IN TO THE OPTOMETRISTS RECENTLY, BUT I FIND THE POLY GEL WORKS BEST FOR ME..

MY BIGGEST PROBLEM IS I HAVE QUITE A BAD DISABILITY, CALLED (SPASTIC) ATHETIOD CEREBRAL PALSY. IT ALSO MAKES MY HAND AND FINGER DEXTERITY EXTREMELY LIMITED, SO I HAVE TO RELY ON MY CARE SUPPORT, MORNINGS AND AGAIN AT BEDTIME FOR MY EYE CARE. SO I REALLY CAN'T MANAGE TO PUT IN MY GEL DROPS MYSELF. I HAVE AN EYE OINTMENT THAT IS A PRESCRIPTION MEDICINE CALLED LACRI-LUB.. WITH THIS OINTMENT I CAN GET A BETTER SLIPPERY COATING OF LANOLIN, WITH PARAFFIN BASED, AND IT LASTS LONGER THAN THE POLY GEL, BUT AGAIN I RELY ON HELP TO HAVE THE EYE OINTMENT PUT UNDER THE LIDS OF MY EYES.. I DO MANAGE TO USE A PLASTIC EYE SHOWER, TO WASH MY EYES WITH, AS I SQUEEZE THE BOTTLE.. IT PUSHES UP A FINE MISTY SHOWER OF WARM WATER, AND THE WASTE WATER RUNS OUT A TUBE ON THE OUTSIDE OF THE BOTTLE, AND INTO THE HAND BASIN.

I'M NOT SURE IF I COULD GET THE POLY GEL DRAWN UP INTO A SURGICAL SYRINGE, BUT I COULD PUSH THE PLUNGER WITH MY BEST FINGER, BUT I'LL HAVE TO ASK MY NURSE NEXT TIME SHE'S HERE.. I TALKED THIS IDEA WITH MY OPTOMETRIST AND THEY THINK IF MY WIFE DRAWS UP THE POLY GEL BEFORE SHE GOES TO WORK, AND LEAVE IT IN THE REFRIGERATOR TO KEEP IT FROM WARMING UP, IT SHOULD WORK ..

WE DON'T HAVE AIR CONDITIONING HERE, AND WE USUALLY KEEP BOTH DOORS OPEN, TO LET THE COLDER BREEZE THROUGH. WE HAVE A PALLET FIRE FOR HEATING, AND I DO KEEP A BOWL OF WARMISH WATER TO PUT A WASHCLOTH IN, THEN FOLD IT OVER MY EYES, PROBABLY FOR AN HOUR OR TWO, WHEN THE TEMPERATURE GETS A LOT HOTTER.

WITH THE BIGGER HOLE GROWING IN THE OZONE LAYER, WE NOW GET VERY INTENSE SUNSHINE WITH TERRIBLE GLARE.. I'M WEARING MY RAP AROUND SUNNIES ALL DAY AT PRESENT, BUT THEY CAN BUILD UP THE AIR TEMP BETWEEN THE LENS AND THE EYE,, THE IDEA OF THE SUN SHADE TO KEEP THE SUN AND GLARE AWAY FROM THE EYES, I'M GOING TO FOLLOW THIS UP.. I HAVE SEEN TENNIS PLAYERS AND LAWN BOWLERS WEARING THEM, SO I KNOW JUST WHAT YOU MEAN...

I'M INTERESTED IN SEEING IF THE CANCER SOCIETY HERE WILL HELP ME FIND A DARKER PAIR OF FIT-OVERS, AS I HOPE THE EYE DOCTOR CAN MAKE ME A PAIR OF MOISTURE CHAMBER GLASSES/GOGGLES WITH MY PRESCRIPTION LENSES. I KNOW ANOTHER FRIEND WITH BAD SJOGREN'S AND SHE SWEARS BY THEM, AS THEY REALLY KEEP HER EYES MOIST, BUT KEEP OUT ANY DUST OR POLLEN FROM THE AIR...

THE PUNCTAL PLUGS I'VE HEARD A LOT OF SJOGREN'S FOLK REALLY FIND MORE TEARS ARE TRAPED UNDER THE LOWER LID.. I INTEND TO ASK THE EYE DOCTOR, IF I CAN HAVE THEM PUT IN AS SOON AS POSSIBLE... WITH MY CP AND AN ANXIETY DISORDER, PLUS I TAKE A HEAP OF PAIN RELIEF NOW, MY PRIMARY DOCTOR AND MYSELF, DON'T WAN'T TO TAKE ANYMORE MEDS,AS ANOTHER MED MIGHT WORK THE OTHER MEDS IN REVERSE SO I'M MORE THAN HAPPY TO GET PUNCTAL PLUGS IN STRAIGHT AWAY

IF ANYTHING ELSE POPS INTO YOUR HEAD THAT MAY FURTHER AID MY EYE PROBLEMS, I'D BE MORE THAN THANKFUL IF YOU COULD PASS THEM ON TO ME.. . .

THANK YOU FOR YOUR INFO, ALL VERY MUCH APPRECIATED INDEED...

TAKE CARE AND I HAVE LEARNED A LOT OF GOOD FRIENDLY PRACTICAL HELP TODAY...

MIKE

[grahamb]

Hi Mike, I live in Christchurch, and have have SS for about 6 years. I'm short sighted and went to the effort to talk to my optometrist about what sould be done with my prescription in terms of fitting them in wrap around sunglasses. We managed to find a suitable pair, but they did have to make my lenses a bit thinner by grinding them, which was an extra expense - all in all about $600 (eye test included) I think. Well worth it though - I use eyedrops maybe three times a day max, and some days not at all. I have another pair which aren't wrap around, but are suglass frames that I got my prescription fitted into - I did this with a 20% tint, so that I can wear these to blend in a bit better on rainy days, or family get-togethers etc. These ones sit fairly close and don't leave much gap around the eyebrows, bridge and nose.

I wonder if you've considered a foot spa for when sitting? In winter I wear six pairs of socks with Ug boots over top. I think Thinsulate are a good brand for gloves - I wear their finger less ones which are better than the average ones around the department stores.

nextag.com/gloves-thinsulat...

Go well mate.

[MikefromsouthNZ in reply to grahamb]

HI AND THANKS HEAPS FOR YOUR REPLY..

I'M HOPING THE EYE DOCTOR CAN GET ME A PAIR OF MOISTURE CHAMBER GOGGLE, SO I CAN HAVE MY PRESCRIPTION LENSES PUT INTO,.AND THEY SIT IN BEHIND A PAIR OF RAP AROUND VERY DARK FIT-OVERS, AS I'M LIGHT SENSITIVE AS WELL..

ANOTHER REPLY SUGGESTED I TRY THE CANCER SOCIETY FOR GOOD DARK FIT-OVERS, SO I MIGHT SEE THEM IF THEY CAN HELP..

I GET A BOX OF THERMAL GLOVES FOR A YEARS SUPPLY, AND I WEAR WHEELCHAIR GLOVES (ALMOST LIKE HEAVY GARDENING GLOVE) OVER TOP OF THEM.. IF IT IS REAL FROSTY, I ALSO WEAR POSSUM FUR-SKIN MITTS OVER THESE AS WELL.. I INVESTED IN A THERMOTEX FEET INFRARED THERAPY HEAT UNIT, AND IT'S A FANTASTIC WAY TO HEAT MY FROZEN FEET.. I'M QUITE PARANOID ABOUT BURNING OR SCOLDING MY FEET, AS THEY ARE SO NUMB I WOULDN'T KNOW MUCH TIL I COULD FEEL THEM BURNING, BUT THAT WOULD BE FAR TOO LATE.. I TOO WEAR TWO PAIR OF MErino WOOLLY SOCKS, THEN A PAIR OF POSSUM FUR-SKIN BOOT LINERS, THEN A THICK PAIR OF SHEEPSKIN BOOTS.. MY DOCTOR SAID TO PROTECT THEM WELL AND WEAR MANY LAYERS OF WOOLLY SOCKS. HE IS MORE FRIGHTENED IF I GET ANY ULCERS, AS I USE A WHEELCHAIR, THE SURGEON WOULD MOST PROBABLY AMPUTATE MY LOWER LEG, AS I REALLY DON'T USE OR NEED THEM.. MY CIRCULATION IS EXTREMELY POOR IN MY FEET AND LOWER LEGS, AS THEY SIT ON MY WHEELCHAIR FOOT PLATES ALL DAY, WITHOUT ANY MOVEMENT, AND GET EXTREMELY COLD AND NUMB..

HOW DID YOU GO WITH THE EARTHQUAKES, AS I KNOW A HEAP OF FOLKS ARE STILL WAITING TO HEAR IF THEIR HOMES ARE ARE A RIGHT-OFF, BEFORE THEY CAN REALLY AFFORD TO REBUILD.

HEY, THANKS A HEAP AS YOU WILL KNOW MORE OF OUR HARSHER WINTERS, ARE WAY DOWN HERE... KEEP IN TOUCH FRIEND. .

MIKE

[anhydro]

If you go to some of the outdoor shops you may be able to get re-usable warmers. They are basically a gel filled sac, when a little metal tab is pressed the gel starts to crystallise and gives out heat. You regenerate them in boiling water. They are good for going out because you can choose when to start the heat. Indoors I quite like wheat bags. You pop them in the microwave for a couple of minutes and they mould to you quite nicely and you don't have the problem of pouring hot water. You can also get much thinner single use ones that slip into gloves.

I have a pair of gloves with a heating element in the palm - rechargeable batteries on the wrist band. I have also seen socks with a similar heating element but so far my Raynaud's is only affecting my hands. Polar explorers wear balaclavas - not elegant but would cover your nose.

If you want darker wrap round sunglasses then I would try the Blind society, the RNIB in the UK sells various styles and tints and one of them may help. The RNIB also have an eyedrop dispenser, OK it's designed for the elderly and I don't know if you could cope with it but it is worth asking. It won't cope with ointments though.

Sorry I can't be more helpful, you seem to have acquired an unpleasant basket of conditions.

Good luck.

[grahamb]

It's so interesting to hear different peopes' strategies. At least we know that it brings out the investigative, and innovative parts of our minds.

Mike, I've been lucky, I live in a council flat which has stood up really well - hardly any evidence of the shake ups.

[dryjulie]

Hi Mike, I have a terrible time with my dry eyes, but have now found the ultimate solution to keeping my eyes protected. I live in Qld Australia and have now got wrap around glasses from the "Rudy Project", they are cycling glasses which are made in Italy, are totally adjustable, with removable sides and can have your script put in, they have changed my life for the better. Good luck,and take care

Julie