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whotoldya · ‎11-23-2013

We came here because we are disabled. Sharing our good days and our bad days with other members.

I have learned many things from other members postings in this group. These helpful things are mixed up here and there in different topics.

Decided to create a new topic where we post all kinds of things about being Disabled.

Are there things you have found to be helpful?

Are there things you've tried that did not work out so well?

This past year I have enjoyed listening to Healing Music on Pandora Radio for FREE.

Cortizone anti itch cream carefully massaged into regions that hurt and are disabled. Using this product has actually calm down the pain? Heard this from a doctor one day and tried it. It worked for me?

Tylenol works better for me than about anything else.

Drinking a lot of water every day seems to make me feel better.

Being a member of this group has helped me sooooooooooo much.

DWB

Anonymous · ‎11-23-2013

The thing that helps me the most is spending time with others who are disabled. Or who are challenged. I recently found out that my dear friend here is bi-polar. This is the friend who had the brain surgery. She came over today with her two boys, one of whom has ADD and the other, ADHD. The younger one who is 7, is a handful. I took him into the kitchen and had a little talk with him because he was driving his Mom and brother nuts.

He kept saying he's ADHD, is hyper and can't slow down. I pointed to my head and asked him what was up there. He gave me this puzzled look and said, "Brain?" I said yes and said that's what controls our bodies. He insisted he couldn't slow down. So I explained that I have 2 diseases that keep me slowed down all the time but that by using my brain, I can get my body to speed up. I believe I really gave him something to think about. It worked for about half an hour, which is the longest I've ever known him to sit still.

I appreciate this group because we all have our challenges and yet we manage to find a way to not only keep going but to pass along things we think might help someone else in the group. Thank all of you for being part of this group and for all you have shared!

comics-scifi-collectibles · ‎11-24-2013

Magnesium supplements, esepcially Phillips brand ones because they are more concentrated I think. Helps with muscle pain / fibromyalgia. Not saying it makes it go away but brings it down one number on the scale at least.

Also make sure you get enough vitamin D and calcium becasue they also help the immune system. I take 2 thousand milgrams of vitamin d a day. As we get older our bodies do not make the "sunshine" vitamin as well.

Tapping the sore muscle areas NOT rubbing but a quick tapping motion helps to increase circulation and blood flow which reduces some of the fibro pain.

I'll to have to buy an a giant economy tube of the cortisone cream and give it a try. Thanks for a new tip !

Comics-scifi_collectibles Volunteer Community Mentor
Member since 2003

whotoldya · ‎11-25-2013

The Cortizone cream is an "anti itch cream" believe it or not.

Make sure you get "cream" and not the other ones. The other ones are greasy and get all over everything. Also ask for the one with "Aloe" in it.

I got my doctor to prescribe a stronger one than the over the counter version. She gives me 2.5 instead of the 1.0 over the counter one. She has me mix them together on my finger and spread it into the hurting areas.

I like the quick tapping theory sounds great. Sunshine helps me just sitting in it like you said.

Solinoir I like the one you told the little boy. Sometimes when a different person tells them something other than a parent it sticks.

We have some real nice kind members in here. So many postings are right from the heart.

Nice to see some new members posting on here. You are fitting in here really nice. You came to the right place.

Been getting messages from a few members who read but are afraid to post. Maybe posting in the apple pie topic or Thanksgiving dinner will be easier....

Be safe out there everyone,

DWB

Anonymous · ‎11-25-2013

My friend called me to apologize for her son's behavior. I told her there was no reason to apologize. His disability is part of what makes him who he is and I accept all of him...the halo and the horns.

whotoldya · ‎11-26-2013

You are handling this the right way solinoir. Shows you have a big heart.

Some people do not think about what is going on inside the childs mind. Must be frustrating in there.

Been finding out drinking much more water than I was in the past has helped my pain and discomfort level some. Anyone else try that one? It was on tv the other day.

Take care be safe out there if you are traveling,

DWB

agnessrainn · ‎11-26-2013

You are right on the money about drinking water DWB ... I have started drinking more water too and notice that the pain level does go down a notch or two ...

So nice to see so many posting ... and hopefully we will get more and more active as time goes on. Feel free to post in any topic and if you don't see a topic ... you can start a new one.

Kate

agnessrainn · ‎11-27-2013

Part of the treatment plan with my doctor has me attending pain management classes. I never considered myself a chronic patient but that is indeed what I have become.

These classes arm you with alernative ways to deal with chronic pain. Many of the exercises are probably familiar to many of you but I thought I would share some of what I have learned in the 5 weeks I have been going.

Posture is so important ... sitting or standing straight is not always possible for all of us but putting our bodies in as good of an alignment will improve the pain a notch.

Deep breathing ... very effective against pain flares ... breathing in and out and relaxing into the pain ... again, it doesn't go away but it will improve it a notch or two.

Gentle stretching ... some of us are unable to do a lot of exercising ... I for one have been told no yoga. I am hoping my doctor will allow me to try Qigong which is a Chinese system of movement much like Tai Chi. It also incorporates deep breathing. I have just started riding an exercise bike. The other form of exercise my doctor recommended for me was water exercise. Any movement you can do is good for your body.

Change positions or take breaks often. Chronic pain patients especially need to move frequently or pain will flare. So, it is important to stretch, move about or tend to another task for a while.

Guided imagery and meditation. These are both really excellent for the chronic pain patient as it makes you so aware of your body and the key pain centers and how to calm them with gentle thoughts and persuasions.

Knowing when to ask for help and learning to say no. Not always easy to accomplish but so necessary for the chronic pain patient ... amongst others. It is hard to ask for help and to say no but when you have limitations you have to learn to live within them and reach out when you need help with something you can't accomplish alone. Asking for help is okay.

I have learned much about medications and there interactions. Most interesting is that there are many anti depressants that are prescribed for chronic pain ... and not because the patient is depressed either. The medication works on the seratonin uptake in the brain. I don't understand all the medical terminology but the medication can be beneficial both ways.

The goal of the class is to give the chronic pain patient tools to work hand in hand with or replace drugs. My own personal goal is to get off prescription pain meds ... I am on two of them now ... and deal with pain through alternative methods.

Sorry this post got so long ... but I have been passionate and open minded about going to these classes ... and am eager to share things I have learned that may help others.

Kate

Anonymous · ‎11-27-2013

I stopped drinking soda 4 years ago. I immediately lost weight. I don't drink diet soda because the aspertaime (I know I didn't spell that right) has an effect on my pain levels. I was faced with an unusual problem...which should come as no surprise to those of you who read my posts...in that I don't retain minerals. I was drinking so much water that it was flushing the minerals out of my body. Plus my electrolytes were totally out of whack. My doctors told me to drink Gatorade. I think that contributed to my sugar levels going wonky.

So now I drink Powerade Zero which doesn't contain aspertame or sugar and does help balance the electrolytes. Since I use the drops I am still drinking a lot of water. Seems to be working.

Anonymous · ‎11-27-2013

Kate, your pain management class is fantastic! I'm so happy that the medical community is taking chronic pain seriously. It wasn't that long ago that their answer was, "It's all in your head" especially if you're female.

When I was first diagnosed, doctors weren't as familiar with Fibromyalgia as they are today. I also have myalgic encephelomyelitis...M/E...and doctors still aren't familiar with it. (whole bunch of other stuff too but too long a list to go into now). It's been 10 years of trial and error on the meds. One of the ones I was on caused me to gain 30 lbs and I was almost completely bedridden. Needless to say, I'm not taking that one any more. I am fortunate that Lyrica works for me with the pain management...to a certain degree. I also take a number of vitamins and herbal supplements.

Like you, I have a major problem with exercise. What helps the FMS and arthritis hurts the M/E. And, of course, the reverse is true. I have found that Tai Chi is working wonders. I have tried a number of different programs and the one I like best is "Tai Chi For Beginners" with Dr. Lamm. It's taken me almost a year to get through the warm-up exercises and Lesson One but I've finally done it. My Christmas present to myself is to buy the DVD so I have all six lessons.

The one thing I didn't see you mention is diet. I had a friend who found that tomatoes caused his pain levels to skyrocket. Carbs do bad things to me so I limit my intake. I'd probably feel a lot better if I was a vegitarian but there are times my body just screams for a steak.

Tomorrow will be turkey...which is a real treat for me because up until last year I was allergic to any poultry. I quit smoking and the allergy is gone. Go figure.

whotoldya · ‎11-30-2013

This is one of the most educational topics yet. Really learning a lot reading the postings.

About 4 or 5 times a day I roll all around the house 20 times. Making race car sounds all the way of course.

Was an announcer at the races years ago. So I am announcing all sorts of old racing names from the past while rolling around the house 20 times.

This excersize makes my arms and shoulders work. Started out with much less than 20 laps 4 times a day. In the beginning it was just to roll around inside the house a few times and stop. The strength grew over time. Got it up to 20 laps 3 times a day.

Also throw a medium size soft beach ball up and down over and over.

As for pain heat is my best friend. Big old socks 1/2 filled with rice heated up in the micro wave. My wife also bought 3 different items will let you know what they are. Unable to get to them right now.

No pain meds at all. Just Tylenol. Meloxicam for arthritis. And 300 mg of Gabapentin before bed. Gaba has reduced the night time spasms a lot.

Watching funny things on tv really helps. 3 stooges, and other old stuff they show on a channel that is free here.

Now it was my turn to be long winded.

Take care,

DWB

bigestateliquidations · ‎12-15-2013

Been unable to find this group since they changed all the groups locations. Great to see your still active.

B

Anonymous · ‎12-15-2013

We lost a lot of people when eBay changed things back in July. I was going through our list of members and I'd say that at least half of them showed the last visit to the group the same as when it became so hard to find us! Glad you found us again!