24 years old and newly diagnosed Fibro

[courtneypaigep1]

Hi, new to the forum and diagnosed with Fibro 2 months ago.
I'm 24 and the diagnosis was a shock.

I just wanted to ask advice all be it I know we are not doctors.
I am really struggling with my flare ups. I take Sertraline daily which seems to help a little.
When I have a flare up, all the doctors give me is Naproxen and Co-Codamol which take the edge off but make me feel extremely sick and woozy. Paracetamol and Ibuprofen don't help at all.

I was just wondering if there is any other pain relief anyone else takes which doesnt make you feel sick or are pain patches a thing used to help with Fibro?
I'm trying to work and live my life as normally as I can for a 24 year old but it is holding me back when the meds make me feel ill.

 

[sunkacola]

Hi @courtneypaigep1 .......

Unfortunately, there is no one medication that helps everyone who has fibromyalgia, because we are all different. I recommend you read through posts here, and also ask all the questions you want to ask, and gather information as you go.

You will find that there will be someone who says one certain medication ruined their life, while another person will say it saved theirs. One medication gave this person terrible side effects, but did nothing at all for another person.

Consequently, there's no way for anyone to recommend any specific medication for you. We can, and happily will, give out experience with them, and then you can decide which ones you are willing to try. but it is all trial-and-error for each one of us to find out if there's anything that helps. Many of them have side effects.

For me, for instance, gabapentin did nothing at all. Cymbalta gave me terrible side effects. Pregablin (Lyrica) seems to be helping a lot right now, but I have no idea whether or not it will continue to work or if it will stop working or start giving me bad side effects, because so far that's what all medications have done previously.

The most important thing you can do for yourself is experiment with everything you can do to help, and that's not just medication but also diet, exercise, mental state, stress management and so on. Fibromyalgia is a condition that requires a multi-faceted approach to treatment. Medication alone is never enough.
Please read my post of Advice For Managing Fibromyalgia to get ideas and suggestions on that.

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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[valliere]

Hi @courtneypaigep1 ,

I have the same type of feelings, I am 23 and was diagnosed a little less then a year ago. In that time I've been trying to find things that work for me while dealing with what seems like constant flare ups. I have been pregabalin since the beginning along with duluxotine which was added later and have found it lessens the pain but doesn't completely get rid of it which is something I'm struggling with now. I don't have a lot of advice to offer but just wanted to share my experience with you to let you know you're not alone in this young fibro journey! I hope you find something that helps!

 

[courtneypaigep1]

Thank you both for your comments.

The only tricky thing is my GP is refusing to give me any type of painkillers. She said just to take half a naproxen tablet when I have a flare up but won't prescribe me anything else as she doesn't like prescribing painkillers for chronic conditions.
I don't want to be on painkillers for the rest of my life every day but seems like the GP doesn't want to help. She won't refer me to the pain management clinic until I prove nothing else is working even though I have explained that amitriptiline didn't help, paracetamol ibuprofen etc over the counter meds don't touch the pain...

I think it looks like I'm just going to have to ride it out on my own and find alternative ways.
I have been told that CBD is good - has anyone tried this?

 

[sunkacola]

Thank you both for your comments.

The only tricky thing is my GP is refusing to give me any type of painkillers. She said just to take half a naproxen tablet when I have a flare up but won't prescribe me anything else as she doesn't like prescribing painkillers for chronic conditions.
I don't want to be on painkillers for the rest of my life every day but seems like the GP doesn't want to help. She won't refer me to the pain management clinic until I prove nothing else is working even though I have explained that amitriptiline didn't help, paracetamol ibuprofen etc over the counter meds don't touch the pain...

I think it looks like I'm just going to have to ride it out on my own and find alternative ways.
I have been told that CBD is good - has anyone tried this?

I answered your question about CBD and other things in the other thread where you posted about CBD.

 

[Ian waxman]

Hi, new to the forum and diagnosed with Fibro 2 months ago.
I'm 24 and the diagnosis was a shock.

I just wanted to ask advice all be it I know we are not doctors.
I am really struggling with my flare ups. I take Sertraline daily which seems to help a little.
When I have a flare up, all the doctors give me is Naproxen and Co-Codamol which take the edge off but make me feel extremely sick and woozy. Paracetamol and Ibuprofen don't help at all.

I was just wondering if there is any other pain relief anyone else takes which doesnt make you feel sick or are pain patches a thing used to help with Fibro?
I'm trying to work and live my life as normally as I can for a 24 year old but it is holding me back when the meds make me feel ill.

I take 60mcg fentanyl patch and it does help.doctors won’t give it you until they’ve exhausted all pain and depression meds and I’ve took everything!it’s a horrible disease that could be with you all your life!what job do you do cheers

 

[hope23]

I want you to know you are not alone, i was 21 when i became unwell and then was diagnosed with fibro and cfs, i am now 30 and 18 months ago i was diagnosed with Ehlers Danlos syndrom(with active and frequent dislocations, and Ankylosing Spondilitis
The reason i say the above is to say dont ever give up on pushing to find whats going to work for you, i would say im not alone in this but we need to be our biggest advocates, had i not kept pushing and questioning i would not have got my ehlers danlose and ankylosing spondilitis diagnosis as early and prior to structural changes in my spine happening.
keep asking questions, wanting options from your doctor. This may mean doing your own research and reading, and connecting on forums like this, as sunkacola mentioned what medication(s) and other lifestyle options and alternative therapies that you can try. Unfortunately finding the combination that works for you is trial and error and can be a challenging process to work through but will be 100%worth it for those different things that you find help, typically this is finding a number of things that help a little but together do make an overall difference.

For me the backbone of the management of my conditions is medication based however, while finding the medications that helped me i also tried every alternative therapy available in my country(NZ) as well as lifestyle changes(many different diets as well as exercise etc).

You mentioned your tried amitriptiline and it did nothing, a little know nuance of amitriptiline and nortriptyline is that for those that amitriptiline works for, nortriptyline wont do anything and vice versa, i understand in the US though these two can be a funding cost issue with insurers as one is cheaper than the other

More than happy to discuss the barage of different things i have tried over the past 8 and a half years

 

[blckw1dow]

Hiya @courtneypaigep1
Welcome to the forum .

Sorry for what you are going through I think most of us or all us have had these things at some point. Fibromyalgia sucks & the crap the comes with it .

I was on just co- codamol & ibuprofen to start with, then just naproxen, then just Amitriptiline, now I'm on Co-codamol & codeine, Amitriptiline & Gabpentin these seem to be working for me atm. Naproxen never really dud anything fir my pain just more sleepy than I already was .

Anyway as everyone has said we are not doctors here & everyone is different & different meds work for them, so hang in there & keep on at the doctor you will get there keep you head up .

 

[blckw1dow]

@courtneypaigep1 I have tried CBD & does work for me I do have it sometimes when I'm in a bad flare .

 

[sunkacola]

@courtneypaigep1 I have tried CBD & does work for me I do have it sometimes when I'm in a bad flare .

Just curious...........do you take CBD alone, or is it mixed with THC as well?

 

[blckw1dow]

I just have CBD oil the strongest which I found I have is 50000mg . Hope this helps have a fab weekend .

 

[sunkacola]

I just have CBD oil the strongest which I found I have is 50000mg . Hope this helps have a fab weekend .

Interesting.
No, I'm not looking for help, I was only curious because some people report that CBD alone helps them and others, such as myself, find that unless it is a compound that includes THC, no matter how strong it is it doesn't do anything.

Interestingly, though, I know more people who say that CBD has helped their dog, and of course in the case of giving it to an animal there's certainly no THC in it.

Glad to know that you are among those helped by CBD alone. I wish it helped everyone!

 

[Auriel]

Hi Courtney, welcome to the forum , so young to be having this , (though it isn't a nice thing to have at any age) but it's when the going out and socialising is "usually" at it's highest when mine developed, (and started getting worse around mid 20's)

I remember acting as if i was healthy (and that it wasn't there) as a way to wish it gone (it didn't work) eventually they put me on antidepressants, muscle relaxants, then anti-epileptics , now I take (quite a high dose of) gabapentin, (it causes drowsiness, a good level)

It does seem to be the standard (from reading our other members post's recent and past) that we get a trial + error sort of thing on similar types of medications to see if we get a positive result from them,

 

[courtneypaigep1]

Thank you all for your comments and experience etc.
I think it's going to be a case of going back and forth and trial and error.

One thing I wanted to ask - last week I had an episode where my entire left leg (hip to toes) went completely number and I was unable to feel anything and couldn't move my leg, toes, foot etc - is this common with fibro?
Normally I get pins and needles and some numbness just nowhere near what it was like last week.

 

[sunkacola]

@courtneypaigep1 That could have been just your leg falling asleep in an atypical way, or it could be a neurological issue or a pinched nerve. Definitely something to ask your doctor about.