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

• 
• 

 

[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.

 

[Ian waxman]

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?

Hi!your doctor has sure put you on strong meds.have you had blood tests,mri,x ray.any trauma that has happened in your life can kickstart fybromyalgia.what exactly did the doctor say to you?you should always ask if they have any experience of fybro,they give you meds quite freely and before you know it you’re hooked.i am not disputing that you have fybro just that docs these days give you the meds and really it doesn’t stabilise your pain.i have hot baths and go to the sauna and a gentle swim and I feel great after.the fybro always comes back so on I go taking each day as it comes.30 years of trying to get my fybro stabilised and the only thing that’s helped is fentanyl patches.i take 62.5 which is quite high but my pain was off the radar.i’ve spent countless times at the pain clinic and not really had much joy.you know your body and don’t be afraid to ask for tests that you think will put your mind at ease.we’re all unique and trying to help can be a right minefield.i hope you find comfort and help on the forum.we’re all in it together xxxx

 

[30 plus years]

Fentanyl patches aren't strong or addicting?

 

[Harpy]

Hello everybody,
I recently found this forum and I guess I'm looking for advice

You definitely come to the right forum, so many knowledgeable people here.

. 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.

What a beautiful part of the world you live in.
It’s all a learning experience and hopefully you will get lots of life tips here to help you on ya way.

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.

Isn’t it a learning curve we’ve been thrown?

My pain is more in the main parts of my body shoulders neck, back and hips, with the constant stiffness and achiness
I was so struggling with these pains I was also diagnosed with polymyalgia last October/ November.

I'm finding it hard to feel motivated to continue working and socializing.
It’s dang hard but you will soon work out what you can and can’t do to control them flares.


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?

It’s always a learning experience, you will soon learn on what to do and what not to do to cause a flare and keep them from coming on .
Good luck and keep on scrolling , you will find plenty of knowledge on this forum.

 

[sunkacola]

Fentanyl patches aren't strong or addicting?

Yes. They are.
The thing is, though, that if a person has tried literally everything else without appreciable success, and due to their level of chronic pain they don't have any kind of life left, then it can come down to choosing to be addicted to something that actually does help in order to survive at all.
This is a highly personal choice, and not to be made lightly, but also not one that others should judge, in my opinion. I think it is reasonable to choose something that is potentially addictive over choosing just not to continue living at all, if the pain is that bad.

I am not speaking for anyone else, here. But I have given this a great deal of thought over the course of several years now not with regard to fentanyl (which I have not ever tried) but with regard to another pain medication that is potentially addictive, and know that I will choose the thing that is addictive if that is the only thing that will work.

 

[30 plus years]

I totally agree, and I didn't mean to be judgmental at all. My reaction was to Waxman's post in response to Valliere, when she said she was put on pregabalin, duloxetine and cyclobenzaprine. "Your dr has sure put you on strong meds." Just found it ironic when he then said he was on high dose fentanyl. No judgment here.

 

[sunkacola]

I totally agree, and I didn't mean to be judgmental at all. My reaction was to Waxman's post in response to Valliere, when she said she was put on pregabalin, duloxetine and cyclobenzaprine. "Your dr has sure put you on strong meds." Just found it ironic when he then said he was on high dose fentanyl. No judgment here.

Oh, I did not think you were being judgmental at all!! Sorry if I gave that impression! I was speaking in general terms.
And, I know that in the past I was a bit judgmental about that, myself. I have learned better.

 

[Hopetothrive]

Hi Carolyn

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?

Hi,

I have been diagnosed the last 3 days with fibromyalgia, I have done self diagnosis, what helped me ease the pain is going for walks on daily basis, light runs, cutting sugar also having a routine, living in clean place could make a difference to your energy another thing is don’t force your self doing things when you feel you don’t want to. Regarding socialising, start slowly,

I think mine got worse before realising it is fibromyalgia. My right hand is on constant pain, can’t cook sometimes, my back get locked that I can’t stand straight.

 

[sunkacola]

I have been diagnosed the last 3 days

Greetings, @Hopetothrive ....do you mean three years? Or really three days?

I have done self diagnosis,

Welcome to the forum. Hope you find it useful to you.
One thing I feel the need to mention.....if you have not been diagnosed by a doctor, but self-diagnosed only, I strongly urge you to see a qualified doctor and get tested for the things, (of which there are many), that have the same symptoms as fibromyalgia.

You cannot know what is going on with you without ruling out the things for which there are definitive tests. And if, by chance, you actually have something else....or have something else in addition to fibro....it might be something for which there are effective treatments! It is always a big gamble with your health if you self-diagnose rather than seeing a doctor. Just a word to the wise.

 

[Ian waxman]

Fentanyl patches aren't strong or addicting?

Yes they are strong and addicting.i’m trying to wean off them and it’s pure hell.headache,nausea,upset stomach,crazy hallucinations.brain zaps.i truthfully wish i never went on em.the fybro pains still there so I’ve decided to live with it.painkillers are pure failures they just get you addicted.its gonna be a long tortuous road coming off 62.5 fentanyl.its worse than being a drug addict

 

[Harpy]

Yes they are strong and addicting.i’m trying to wean off them and it’s pure hell.headache,nausea,upset stomach,crazy hallucinations.brain zaps.i truthfully wish i never went on em.the fybro pains still there so I’ve decided to live with it.painkillers are pure failures they just get you addicted.its gonna be a long tortuous road coming off 62.5 fentanyl.its worse than being a drug addict

Good luck Ian.
Took me 7 months of hell , something I won’t ever use again. I do agree They didn’t help after a few months so we just kept upping them each month.