Dx today with fibro...would love to get advice! What works for you?

After MANY years of believing I might have fibro I finally was diagnosed today. This comes 5 months after being diagnosed with Crohn's disease and IBS.
I know that being hit with a couple of nasty dx's in a short period of time should have me crawling under the covers for a good cry... but honestly I am just relieved to finally have answers and to be getting some treatment!

The crohn's has made massive improvements since the team (rheumy, gastro, internist and neurologist) started me on meds. And now we are adding cymbalta for the fibro. I am wondering if it is helping any of you? Also I would love any advice you might have for me. I have learned that I really just have a finite amount of energy and that I need to choose which tasks I will do in a day. I have never been good at napping but I am willing to change my ways. I quit work about a year and half ago because I just didn't feel well enough to continue. I will be filing for disability. I have a wonderful husband who is very supportive and never complains, but the loss of my income has certainly had an effect on life.
Please feel free to share anything that has or for that matter, has not worked for you.

If you haven't already, you really need to read the "Spoon Theory" story (also linked in the Fibro 101 thread) http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf It really puts the lack of energy and the need to carefully choose your tasks that you're experiencing into context.

I am not diagnosed but am working under the assumption that I have Fibro also. So far one of the things that I enjoy the most is yoga. Some days my body screams at me and I just take it really easy at the classes, but the cool down periods are so wonderfully relaxing.

Hi there,

Welcome to the fibromyalgia forum. So glad that you have joined us. Everybody is so right, and I would like to add, that if you have a lot of pain in your neck and shoulders, try what is called a "bed buddy". It is a tube made out of fabric filled with rice (or beans) that you microwave. Then wrap it in a towel and put it around your neck. The moist heat feels wonderful. And it loosens up your muscles. That is where I carry a lot of my tension. So I use on a lot.

Walking helps me too. I get out and walk a little each day. The more that you do, the more that you are able to do. But pace yourself. Because if you over do it, you suffer. I try to break up my day so that I am doing different types of activities. That also helps. Because we can never do what we did before, but we can do something. Keep your mind busy and stay in the moment, that helps take your mind off of the pain.

I am sure that others will give you some more tips. I hope that you do feel better soon. A lot of us have multiple illnesses, so you aren't alone there.

Take care, and keep posting.

Hugs, Karen

HealingWell is great isn't it? I just love it here, as you can tell, I am on a lot. Probably too much. lol...

I think the bed buddy is only about 20.00, If I remember right. I got two of them a couple of years ago. They are really nice in the winter. We have cold weather in Michigan and at night I heat them up and put them in the bed with me. One at my neck and one at my feet. They really help with warming you up. A warm pool sounds great. Just floating in the water sounds like a good idea today. A couple of years back I made the mistake of going in the river. The water was cold and moving fast. My legs ached for two days. So I have to be careful and make sure the water isn't too cold. I love taking my dog down as she loves the water.

I hope that you can start walking your dog regularly. I have lost 20 pounds since spring when I started walking. Also drinking a lot of lemon water and cut out the soda. I snuck and had a fountain pop on Tuesday though (sshhh don't tell anybody, lol).

I hope that you are feeling well today. Do keep posting and let us know how you are doing.

Hugs, Karen

mamabee,
you are so right about it being a relief! Heck, I have already lived with it for probably 10 years, now I know what to treat! Thanks for your input on Cymbalta. I have never tried tramadol but i sure see that it works for a lot of people. I should look into it.

Karen,
I took the dog for a short walk. 15 minutes, its a start right? I am kinda hoping none of the marathon trainers that are on my country road saw me.. 15 minutes and I was done. lol

Well today is methotrexate injection day so I know I will be tired for the next couple days. :-/ Guess I will use up a couple more of my "spoons" to get a few things cleaned up so tomorrow can be "lazy".

Moonsinger said...
If you haven't already, you really need to read the "Spoon Theory" story (also linked in the Fibro 101 thread) http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf It really puts the lack of energy and the need to carefully choose your tasks that you're experiencing into context.

I am not diagnosed but am working under the assumption that I have Fibro also. So far one of the things that I enjoy the most is yoga. Some days my body screams at me and I just take it really easy at the classes, but the cool down periods are so wonderfully relaxing.

I agree ! The right yoga class can really be wonderful ! Just nurturing yourself, gently moving and aligning with the body , being around healing energy and putting healthy things into my body ( fresh live foods ) using non toxic cosmetics , clothing and household items such as laundry detergent , soaps, shampoos , cleansers, etc. Being around positive and uplifting people and spending time in beauty ( nature) ! Those are some of the things that have helped lessen my Fibro pain. Also, if you can using food, diet and exercise to promote health and pain management instead of pain meds if you possibly can ! My pain meds where worsening my Fibro rather than healing ....it was masking but not improving !! I think often we need to trust our bodies deep intelligence and give it a chance .....not bombarding it but allowing by taking a responsibility for what we are "feeding' it be it food, thoughts, etc.

As for me, I've already gone the drug route and found it soooo unsatisfactory. The drugs
have so many hidden side effects that they don't tell you about. I never knew the wonderful
"dry mouth" so many have will actually rot your teeth out. Unfortunately, I found out way
too late and most of my back ones have been pulled. I used to only get about a cavity every
7 years or so. What a difference!!!
I've gone to the herbal route with a hydrocordone backup when all else fails. Luckily, I can
baby a 30 day supply for about 4-6 months. I find amino acid therapy for the muscles works.
Cinnamon and raw honey work for the fatigue. I use malic acid as the nodes on my hands
are from a magnesium deficiency. I do other ones for my arthritis and sciatica, and heart issues.
No more anti-inflammatories or heart meds. All natural if possible.