Afraid of Fibromyalgia

[DivaDiba0212]

Hello all, 

I am new to fitbit as of today and I am just starting my weight loss journey. It just so happens that my phone company was able to help me get a free FitBit and it is just the tool I have been searching for to get going! There is only one thing I am afraid of now that I have been wearing this today. Fibromyalgia runs in my family, and I have began to show all of the signs that my family members began showing just before they were diagnosed with fibromyalgia. My whole body is constantly hurting. Today as I checked in with my fitbit I realized how hard it is for me to get around when I am hurting. During the week I do not have a choice, and I am very active at my job regardless of the pain. In fact, when I am active the pain is duller than when I am at home. I know I cannot stay active all the time. But days like today, when I feel I have been ran over by a truck, it was very challenging to be active at all. I did manage to get up for a while and move about, but it is no where near what I should be doing. I guess what I am wondering is if there are any other FitBit users who have fibromyalgia and know how to cope on days like today? 

I have a doctor appointment this coming week to address this issue. I will either be diagnosed officially, or I will be looking with my doctor for other possible explanations for the pain. I am afraid of what will happen. Can any of you give me some tips? Thanks in advance

Tiffany 

[Odyssey13]

@DivaDiba0212  March will be here before you know it. Just try to plan a wedding that is at the pace you want and not so crazy you wish you'd eloped!

I hate those battles with insurance and doctors. Sometimes they need to stop and think about the needs of the patient.

It sounds like you're staying busy and have a handle on those not so good days. You really are going to get through all this to the other side of healthy and happy!

[trvlta00]

I didn't read all the replies, so someone else may have already said this, but it's been proven through numerous studies that exercise actually helps fibro.  I don't know if this is certain types of exercise or not, but worth looking into further.  My mother has this, and lately it's been suggested that I get it checked out as well, so I may not be far behind you.  I definitely know the feeling of hard to be active when you're in pain or sick though.  Good luck to you.

[jessb417]

Hi, I'm new to Fitbit and noticed your post since I also have fibromyalgia. I hope you're doing better! I'm 28 and was diagnosed 4 1/2 years ago. For about the first 3 years I just took Lyrica, and did okay but didn't have the energy to be active, and started putting on weight. In the summer of 2013 I started having a lot of muscle weakness, way more than before, along with spasms which were worse the more I tried to do (aka daily living).

Then finally this past summer through some research I found out about some supplements which I have been taking ever since. ALA (alpha lipoic acid), Fibro DMG by Food Science of Vermont (Amazon), and the one I think helps the most is Ribose. Some of the research I found indicated that in FM patients the body doesn't make enough ATP (gives muscles energy) or that our muscles don't uptake enough, and the Ribose helps to generate more. I take 3000 mg of that 3 times a day. Apparently you can take more but my digestive system didn't agree with that. 🙂

Hope this helps! I will friend you.

[briana928]

Hey Tiffany! I just joined FitBit and was directed to your post. I too have Fibromyalgia, along with some other chronic illnesses. I'm still working on reading through all the responses on here but I wanted to reach out and say hello! I sent you a friend request 🙂 I'm looking for some more friends on here with similar limitations so we can all cheer each other on! Im really excited to see how this will encourage me to get up and move. As tired as I get, laying in bed sometimes makes the pain worse!

[DivaDiba0212]

Hi everyone, 

I am so sorry I have not replied for a while. I did not realize I had any more responses until I got an email today. Jessb417, thank you so much for your comments. It is encouraging to see someone who was diagnosed near my age. I am on Lyrica finally after the doctors fought with my insurance as well as muscle relaxors and even though this is my first run with meds for fibro, I feel better than I did and it gives me hope.  Learning to live with this illness is a daily struggle. Everything is different. I am working, but this will be my last school year with the school I am with as juggling work and school is too much and my doctor wants me to chose. I dont know how I will handle not being able to work, as I already feel like I let everyone down around me as I am now. I can't imagine how worse I'll feel not contributing. One day at a time. 

On a positive note, in 11 days I will be married. The stress from planning and leading to the wedding has put me into several flare ups, but this is going to be worth it. I am hoping for one day, my wedding day, to be in less pain. One step at a time. ❤️ 

Tiffany 

[DivaDiba0212]

Hi Briana928,

I am so glad someone sent you here! I am happy to talk with you and look forward to cheering each other on when we are struggling as well as when we are feeling better. I accepted your friend request! I know what you mean about the pain and staying in bed. It is a viscous circle because you're so tired, but if you get up the pain might ease, and then you will use spoons and be even more tired than before. On days that I can handle it after work, as much as I want to lay down, I try and go on a walk later in the evening to keep myself moving. This sometimes helps. I am still learning of how to let myself say no, and know my limits, as I am so so used to not having those. So good to meet you! 

Tiffany 

[wildfern]

I was diagnose with fibromyalgia in 1988.  I struggled for years with different medications from steroids to muscle relaxers to injections and pills and more pills.  That's when I really started working out though.  The days when I couldn't get out of bed scared me half to death.  With the working out, being very active and the right med combination, I haven't had a flair up in over ten years!!!  Some days it stil hurts to get up and start moving, but I do it.

Don't let it stop or alter or change your goals!!!!!

[Odyssey13]

@DivaDiba0212Eleven days and you'll be starting your new life. Please don't be down on yourself. You're not letting anyone down. Right now, you have to take care of yourself and learn how to handle the medication and getting used to the new routine. Concentrate on your schooling and try not to worry. You have a good attitude and you have your whole life ahead of you.

Remember, one step at a time. You're going to be a beautiful bride and your future will be amazing. Just don't let the fibromyalgia take over. No matter what, you have support here and in the man you'll soon be calling your husband. Never give up.

[Odyssey13]

@DivaDiba0212  Well, by now I suppose you are wedded and settling back into a routine. How was everything?

[CelticLady]

I know you posted your question about fibromyalgia years ago, but I thought I'd reply anyway. I've had it for most of my life and have tried to remain fit and then, when that didn't work, regain my fitness. I'm trying again and I have a system that might work for you. I noted my steps on a day that when I felt bad and did very little. I set that as my "minimum." Each day I bump "my minimum" up a wee bit. Most days I do more than that, but I require myself to do at least that much. If it's a bad day, as soon as I feel the buzz, I'm off the hook. Overall, the plan is to increase my endurance. I don't know if it will work. I've only been doing it a couple of weeks and so far, I'm getting progressively more and more sore. (The story of my life and others with this *&^% disorder.) I wish you all the best. Don't stop trying to improve your health and your life. It's hard. It usually feels like we're losing more ground than we're gaining. But we don't truly lose unless we quit.