Hints to make life easier

Support Positive Pick-Me-Ups
1

Hey everyone,

I just realised that there is no where on here where we can put tips that we find make for an easier life. Here are a couple of mine to get us started:

  • There is an app called Manage my pain lite - download and try it. I find that by keeping a record of things I can see what sets certain events off. It helped me find the link between smoke and fibro flare-ups. I would suggest customising the lists of locations of pain and associated symptoms. If you find that sometimes one side of your body is worse than others try adding things like "wrist (left)" rather than just wrists, it will help a lot.
  • Many medications are over sedating, go for the lowest dose to alleviate your symptoms. Remember that way you can always have more if needed but may not end up so sleepy.
  • Don't be frightened to do your own research and take this to the "experts". They may not be aware of something that can be very helpful. Always remember that doctors and experts are there to treat you, they are not you. The best expert relating to your body is you, not them.

Please post tips below so we can help each other live with this.

Mikex

2

I recently started using that app last week. I love how it averages everything out so you can see where you have the most complaints in, pain levels, and what type of pain, etc etc. It's pretty cool. Best of all, it was free.

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  • Don't over do it on a good fibro day. It will just lead to a bad fibro day.
  • Watch what you eat. It can have a big effect on how you feel.
4

Yep, there is a paid version though if you want to store more than ten records at a time. I think I may upgrade to it if it carries on being wonderful :-) Have you customised it to add your own categories into it for where the pain is etc?

Mikex

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Yes, I added more pain locations to the list since it only came with a couple. Also added symptoms to it. I need to play around with it some more to get it exactly how I need it, but otherwise its been awesome. My favourite part is how it averages everything out. I will definetly use it at my next rheumy appointment.

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That is what I am using it for... it beats having to write a pain diary when you can hardly hold a pen :-) Still I must be careful that I do not get too carried away on it adding things. I am up to about 30 locations already. One thing I do not like much about it is when you add a record it adds it from the time you added it unless you go back and change it. It would be better if you told it say 6 hours and it worked out the start time for you by using the time you are inputting it as the finish time. Then again since I am sore nearly constantly it isn't too much of a problem.

Mikex

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Yeah the timing thing needs work. But like you said, the pain is constant, especially if it's a bad day, so timing isn't really too relevant. I've been using the note part to put the approx. time though. Like, I'll say I woke up in pain with pain continuing throughout the day. That way I don't have to fuss with the time.

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That is the best way to do it I think... kind of "I woke up because of the pain, have been sore ever since and will go to sleep in pain" :-(

Mikex

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I keep a journal and spill my feelings in it. If something consisitently is an issue it realize that I need to address it. Sometimes I go to the person. I think by writing it down for a few days then I have my thoughts all clear by the time I talk to them. I had a childhood and early adulthood of bottling up my feelings so I am trying break that.

10

That sounds like a really good way of doing things. I do a similar thing but with a dicta-phone because I can play that back and hear it, or plug it in to the laptop and have it type what I said and read it but basically the same idea. The problem I have is I will do it every day for a couple of weeks and then give up on it for ages. I must start again really

Mikex

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I am the same way. I just bottle it up because I'm not very good at expressing how I feel and then I eventually break and have a huge meltdown. And everytime that happens I tell myself that I need to stop doing this and address it at the time instead of letting it all build up on top of each other. I like that idea of clearing your thoughts for a few days and then deal with the situation. I need to try that. Thanks :)

12

This is a very good, helpful post!

It is also very important to always tell your Doctor all meds and OTCs that you take, even the occassional ones, to avoid possible drug interactions.

13

Hi Mike, thanks for starting this discussion. There are other discussions about what has helped people, but they are not easy to find unless you know how. Here are my suggestions:

My doc said the only exercise he wanted me doing was gentle stretches and strengthening with gentle strength exercise bands. They come in different strengths, and I didn't know it, and bought the most difficult one, so I need to buy a different one. You can do yoga in limited spurts if its a yoga for chronic illness. There are some videos especially for arthritis and fibro that let you use a chair for support and are modified movements, but don't do it for an hour at a time. Starting with just a few minutes is enough.

I have a WONDERFUL, scent free pain cream. It's a prescription. Diclofenac 10%. Your pharmacist mixes it up for you. Most pharmacies within department stores can't do it, but individual pharmacies can. It has properties that are muscle relaxant, somewhat numbing, and anti-inflammatory. You can buy it over the counter as Voltaren Emulgel, but that's only 1.6%. Still, people say it helps them, but they may not have fibro, which includes nerve pain.

The gentle stretching, not overdoing to point of pain, the pain cream, massage, gentle strengthening, are all good pain control techniques.

I also was taking pantothenic acid, (which is vitamin B5). It dissolves lactic acid in your muscles that makes your muscles hurt after overdoing.) A university football team Dr. taught me that one. He said it keeps the players off of narcotics it works so well. It can be used for muscle injuries or just after workouts or for constant pain like we have. I was told to take up to 500 mg. every 6 hours, and that it actually HEALS your stomach and liver, unlike ibuprofen or tylenol, and it's also cheaper.

My daughter was also put into remission from her fibro by taking D-Ribose. Check out www.endfatigue.com . The Dr. who runs the site is an M.D. and a naturopath and has made incredible discoveries and remedies for various fatigue based illnesses, which are his specialty. He and his brother are both doctors and naturopaths, and his brother is the writer for the Dr. Oz show.

Hang in there, there are various remedies and alternatives to help. Hang in...like this..

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Thank you :) I will have a look into the B5 because it sounds really good. I take my D-Ribose daily and am a lot better than when I started it. I have gone through a fair bit of it and it seems to have made me better to a point and then held me there :). I have a dicloflenac gel prescribed to me, it is a 10% one as well but mine smells of licorice or aniseed for some reason so I would definitely prefer a scent free one :)

Mikex

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Oh, yes ask your pharmacist for an unscented cream such as Taro cream. Tell him you want it to have no scent at all, and if he says it's not possible, assure him that it is. I'm so glad you have found some of the same answers that I have! It took 3 weeks for me to build up enough D-Ribose in my system for it to work, but I sure felt better when I hit the right level and maintained it.

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Where do you get the D-Ribose? Pharmacy?

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Over here no, but health food shops like Holland and Barrett.

UK Link and USA Link and not forgetting Canada Link

Mikex

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No, it's an all natural supplement, so you get it from health food stores, but it's WAYYY too expensive to buy it locally. They charge you the retail price AND add the price of the store rent, employee payments etc. etc. It's cheaper to get it online. I buy from www.vitacost.com . Some prefer the powder and mix it into a drink, some like me prefer the capsule, I just don't need the mess it makes, and I want it all in my stomach, not on the sides of a glass. So I buy the capsules rather than the powder. It's an amino acid that is already in our bodies that helps your cells get oxygen and nutrients individually. When your cells don't get enough oxygen, whatever part of the body it is, will not function and will have pain. That's why fibro affects every part of our system.

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Dozer, I bought dribose on Amazon. That is where I up most supplements since I get free shipping

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do u know of any apps for managing pain for people who dont have an android?