diagnosed and don't know what to do now, 23F

[valliere]

Hello everybody,
I recently found this forum and I guess I'm looking for advice. I am a 23-year-old female living in Canada, I got diagnosed probably close to a year ago now and am still wondering what to do next. I've been on a mix of pregabalin and duloxetine and recently in the last few months have started using cyclobenzaprine when needed. Even with the medications I feel like I am still constantly battling flare-ups and am always in pain, I have been reaching for the muscle relaxers more often than I would like but even those I don't find give me the relief I'm looking for. My pain is more in the main parts of my body shoulders neck, back and hips, with the constant stiffness and achiness I'm finding it hard to feel motivated to continue working and socializing. I am currently waiting for a call from a pain specialist however Im not sure how long that will be, I'm just wondering if anyone has any advice to offer on just feeling a bit better and what you do to battle the chronic pain?

 

[sunkacola]

Greetings, and welcome to the forum, @valliere .

The thing about medications is that they work differently on each person with fibromyalgia. So, one will be great for one person and awful for the next. You are on quite a cocktail of medications, and if they are really not helping you then it might be time to have a conversation with your doctor about trying something different.

Doctors can offer pain medication, but unfortunately they rarely have anything else to offer. And there are a lot of things you can do to help yourself that are apart from medications. I'm not saying you shouldn't take medications, only that it's good to remember that medications can only do so much, and for some people that's very little, and they are only a part of what you can be doing to manage and treat your symptoms when you have fibro.

I wrote a post that has suggestions and advice for managing fibro. See if anything there is helpful to you. Remember you don't need to feel overwhelmed....no need to try to do everything at once. But do as much as you can do, to start the process of self-discovery in what will help you.

You can also come here to ask questions, vent, and simply get support and encouragement. That is why we are here.

S

Thread 'My advice for managing fibromyalgia (especially for newcomers)'

Jul 21, 2020

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a prescription and there are no guarantees. But I believe that if you can do these things, it will improve the quality of your life.

First thing to remember is that Fibro is not a death sentence and if you learn how to manage it, it will very possibly not always be as bad as it is now.

I was at...

• sunkacola
• Replies: 29
• Forum: General discussions about fibromyalgia

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[sunkacola]

what you do to battle the chronic pain

Also.......here's just a little bit of (dare I say wisdom?) that I have learned in the process of managing fibromyalgia for a while now and being on this forum.

I have found it very helpful, as have other people, if I don't think of this as a "battle".

The thing is, this is y our body. Nothing outside of yourself. It's not a virus or a tumor that shouldn't be there and that you can do battle with to try to make it go away. So if you think of yourself as doing battle, you are only doing battle with yourself and that is usually not a helpful approach.

Instead, what I try to do is think of my body as a soft vulnerable creature like a puppy, that is hurting. The thing one does with a hurt puppy is take soft and gentle care of them, telling them that they are safe now and will be OK. I find that if I treat myself and my painful body in that way it is more effective than if I have an attitude of fighting with the pain. I have found that if I think I am fighting it, I am tense and that only makes pain worse. Whereas, if I am thinking of being kind to myself, I soften and relax more, allowing the pain to just be there, maybe moving through me, and that can lessen it a bit.

 

[valliere]

Thank you @sunkacola ,

I read your attached post when I first started looking at this forum, which honestly was not much longer then a week or 2 ago but I finally decided that it was time for me to take the wheel in this journey instead of waiting for whatever my doctor says next. Your post really gave me a lot of info on what I could do as first steps in this self research path.

Since I read that I have been working with a dietician and have started to a Low FODMAP diet to see if the that makes my stomach issues (among whatever else IBS is also a problem for me) better and maybe that makes other things feel better? i am also trying to start small stretching whenever I can throughout the day. I work in childcare so im fortunate to be able to have a lot of time to stretch and even incorporate it into my daily routine with the children at work, however the down side of working in childcare is that it also puts alot of stress on my body. I'm still learning how to set boundaries personally and professionally to not push myself over the limit, which so far has been difficult!

What you said about treating yourself soft and with care is something that is really sitting with me now and something I will certainly keep in mind in this journey. It feels so easy to get overwhelmed by everything but this forum has really opened my eyes to what I can be doing to help myself but also just to ease the feeling of being alone in all of this.

 

[sunkacola]

@valliere ......I don't know a thing about children, so this may not be helpful. but when I read your post I had an idea, so I thought I would offer it.

what if you were to do a little time each day when you do stretching exercises with the children in your care? Teaching them gentle stretches, and doing them alongside the kids. Maybe they would enjoy that and it would be something to share with them, as well as giving you another chance to do it for yourself.