Tips for Coping...

[Corella]

I am at the research stage of my diagnosis, trying to find ways to make life easier, so far this is what I am doing:

Eyes - I use Polytears and Optive and I use Visco tears at night and I have been prescribed a spray to spray on my eyelids, although what that does I do not know.

Teeth - trying to get into the habit of flossing after each and everything I eat, Biotene drops, Colgate dry mouth wash and 3 monthly checks at the dentist.

Bones - oh my goodness, I did a 6km walk round the lakes today with my dog, stupid of me as I was not even halfway round, my hips started to protest and I was at the point of no return, my dog looked at me accusingly as he has bad hips for a 3 year old, and we both hobbled along trying to pretend that the tiger snakes were not active at that time and I had to tread very carefully as not to tread on anything by accident.

I take Panadol Osteo for bedtime and Mersyndol Night strength during the day, although my little walk this morning has killed me so I have just topped up with some more panadol.

I start the Plaquenil next week so fingers crossed for that one.

And, I have seen on another Sjogrens site about a Zen Chi Massager - you lie on your back and put your feet on it and it massages your feet and improves circulation, the Sjogrens Society of WA recommends it and it is like a mini workout without the sweat and is meant to be very good, so when I can afford that I will buy it and let you know how I get on with it.

A very nice lady on here sent me a message saying she has Vitaleyes I think it is called, goggles to put on your eyes at night to keep them moisturised, now I know I wont look like a sex symbol of the month with that, but I am going to give it a go.

So do any of you have any coping tips that help you - pain relief, eye discomfort, hair care - anything that you could pass on, which exercise helps you? I know if I walk too far like I have today, I will pay the price tomorrow.

Oh yes, been out in the sun today with total sunblock and a hat and I have malar rash on my cheeks - dont know what that is all about but I look like Billy Bunter!

What are your coping mechanisms? I would love to know.

[mshistory]

I like the Systane eye drops, but yours may work just as well. I also use a dry mouth toothpaste (Biotene) and use ACT Dry Mouth Rinse twice daily - my dentist and dental hygienest both agreed with me that ACT Dry Mouth is probably the best rinse available OTC because it contains fluoride (Biotene does not) and the Listerine option that doesn't contain alcohol apparently doesn't do anything (the dental hygienist said it was useless). I have a lot of decalcified areas (I think that's what they called them) on my teeth so the fluoride is extremely important. I also floss every night.

I've been on Plaquenil for about five months and it has helped with the joint pain and swelling, but my knees still act up but not as bad. I'm on Rx strength naproxen right now but that's for pleurisy but I'm sure it will help with the joint pain too ... but I will have to stop taking it after a week (I think...brain fog)

The fatigue has been one of the worst symptoms for me. Plaquenil has not helped, and I am going to try a low dose of Savella but I'm not holding out hope it's going to do much since I can only take the lowest dose.

I feel you on the sensitivity to UV and sunlight .... I no longer spend more than 15 minutes in Wal-Mart because their lights make me sick, and I avoid sunlight as much as possible. The most sunlight I get is walking from my car to the building where I teach!

[KellyG999]

Hi Corella,

Wow - it sounds like you have put a lot of time and research into managing your illness. Good for you. As you read more and more posts, you'll find that doctors can be a help but we must be our own advocates, especially if we are not being heard and managed properly! 

The only thing I would add is to ensure you are always kept warm enough to avoid the bone chilling pain of coldness. I find that my office can be so cold that my hands and feet really ache. So I have a heating pad i put on the back of my chair or on my lap, and I can warm my hands on it too. We aren't allowed space heaters so this is a good compromise.

Also, I find that I really suffer if I fail to take in enough good fluids like water and herbal tea. Coffee doesn't count! So I keep a BIG water bottle with me and I make sure I refill and drink it 2-3 times a day or more.

Take care,

KellyG

[Diane54]

Here are a few of my tips :

I use Restasis drops and iif I am in a flare I supplement with Systane. I have a cool eye mask in my refrigerator so when my eyes are tired or swollen
I drink bottled water throughout the day...this way I can monitor how much water I am ingesting
I use no dyes, no perfumes soaps............my skin is so dry and much more sensitve
Sunglasses are a must,,.and I try to stay out of the sun
Take all medications as directed
Biotene products for your mouth, take good care of your teeth, regular dental checkups

last but not least.............................................................LISTEN to your body.....if you are getting tired....stop and take that rest, try to eliminate stress in your life the best that you can!

[quietdynamics]

Correla...I was curious about the chi machine and read up on Wiki. They state: 'The Chi Machine. It holds US FDA approval as a Class 1 Medical Device Regulation #890.5660
Wonder if insurance cover it?

I was looking at books on acupressure and reflexology.


Dealing with dry skin and scalp:
I use Olive oil to clean and moisturize my skin. I apply to my face massage in and wipe off dirt and dry skin. Olive oil has antioxidants. It is absorbed and does not leave an oily film.
I cannot take hot showers, it leaves me fatigued and my skin drier...I use Dove soap and a Mitt to remove and slough off dead skin...Pat dry, leaving some water and apply Olive Oil.... a little bit goes a long way.

Somewhere I read to wash hair with conditioner. I wet my hair and rub conditioner in my hands and massage into scalp, leave in for awhile ...then rinse. My hair is past my shoulders and my arms get tired easily so I use a wide tooth comb in the shower before I rinse the diluted conditioner. And I leave some conditioner on the ends ... even my hair is dry and it even helps with static.

Scalp massage I use an "Indian Hemp Hair and Scalp Treatment"   google that and some balms should come up ... I found this in a Dollar Store. This product is marketed to folks with nappy/course hair...but works on my scalp and is NOT greasy.  Has Petrolaum, Lanolin, Oils: Jojoba,safflower, Wheat germ, Hemp, Nettle, Rosemary, burdock........etc.  And I massage it into my dry nails, heels of my foot and as a lip softener.

[Corella]

Thank you all for replying, keep it coming.

The ACT mouth wash I am deffo going to try, thanks for that.

I have ordered my Chi massager, got it off Ebay - brand new off a massage therapist that sells her stuff, she has excellent feedback, I have researched the massager and it comes with good reviews, cant wait to try it.

Yesterday after my Panadol Osteo, I was still in agony and thought 'now what, I have hours till I can take anything else' so this alternative method - the massager, may just help, I will let you know what I think of that.

I meant to ask you all, I tried Melatonin tablets to help me sleep and both times I have tried them, I felt so weak and sick the next day, can they do that or is it my imagination?

[irish]

Quiet Dynamics, I read your post and had to leave you a message. Do you have myasthenia gravis??

The reason I asked is because you listed 2 symptoms in your post. You said that you get weak from a hot shower and that your arms get tired when you wash your hair. These are 2 symptoms of myasthenia gravis.

If you do have myasthenia gravis just ignore my post, but if you have not been diagnosed with it I would recommend that you do a search on it. Myasthenia is an autoimmune disease that affects the uptake of acetylcholine by the nerve endings. There is an enzyme at these nerve endings that enables the nerve impluses to be relayed to the muscles. The autoimmune disease destroys this enzyme which results in less muscle strength.

This disease can be very serious if not treated. Not only does it make walking and using the arms difficult but also standing and sitting, holding up the head, etc. Also, muscle weakness in the eye lid is common. It also can affect the muscle action in the diaphram which can result in paralysis. This "myasthenic crisis", as the paralysis of diaphram is called, can result in death if intervention isn't done. Intervention is usually ER with intubation for a couple of weeks until the IVIG and plasmaphoresis can be done.

It would be good for you to ask your doc about this or ask for a referral to a neurologist. I had many symptoms since I was 20 years old or so and was not diagnosed until I was 63 years old.Irish

[quietdynamics]

Thank you Irish,
I posted a topic "relentless headache" and will be calling the Neurologist tomorrow.
I take notes to my appts. as I have become forgetful, and because I wonder if they listen ...  I do put on the notes retain for Medical Records.  This is a new dr, from an ER visit and when he suggested I take notes.... I thought "I love you!!!"

In that post I mention losing muscle control of my right eye. I did lose the use of my left arm for a year (the morning after a flu vaccination) And twice the use of my left leg. I am going to copy my post and take them to the appt.

Goodnight All