What else to do?

AMiller

New member
Joined
Oct 30, 2022
Messages
2
I have so much pain every day. I do housework & grocery shopping only for it to ruin my day or days with horrible pain. I have tried every fibro medication to find nothing helps. Now I drink to dull the pain. Nobody really understands what I’m going through. It effects other parts of my life. Relationships & other medical issues. I feel like I’m never healthy. I was diagnosed 10 years ago at 37. I’ve tried all the fibro drugs. They just made me feel worse. I don’t know what else to do….
 

cookiebaker

Very helpful member
Joined
Jul 26, 2022
Messages
672
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
hello, @AMiller and welcome.

There are plenty of folks here that understand what you are going through, and yes, fibro does affect other/all parts of our lives. How can it not?

First thing I am going to suggest is that you stop drinking alcohol. While it may numb the pain temporarily, it is doing you more harm than good and that is a road you really dont want to stay on.

Second suggestion is checking out this post for alternative suggestions for managing your fibro. There are no "quick fix" solutions, but over time you can make things better. It does require commitment and effort on your part, tho. Learning what works for you, what doesn't, and learning to pace yourself will do you more good than any drugs or alcohol ever could.

As you have already found out, drugs are rarely beneficial for us fibromites, however, some supplements can help, but again, it takes time to trial things to figure out if they are going to work for you - what works for one, may not work for another, so trialing is the only way to find out for sure. Also, working with your primary doctor and checking vitamin, mineral and hormone levels is a good idea. Interestingly, many of us have, or have had, low Vitamin D levels.. mine was very low.

Also, managing other medical issues is a big key here. I have fibro, but I also have COPD and osteoarthritis in my neck (severe), lumbar region (moderate) and hands (moderate to severe). Managing my COPD is important, but so is managing the arthritis pain (which is different from the fibro pain).. I have had injections and RF ablation in the lumbar region that has helped that area a great deal... still working out what to do with the neck - test injections did not do much, so have to rethink things there. The arthritis there causes burning/stabbing pains and a general numbness in my shoulders, arms and hands..
My hands flare up sometimes so badly that it hurts to type (or do much of anything really) About the only thing that feels good at times like that is hot water (heat in general) - and i do take some Tylenol Arthritis when they get really bad, but it is not something i take every day.. i only take it when i really need to.

In relation to the fibro, i have IBS issues.. dietary changes have helped that a fair bit.. i dont get nearly as bloated/gassy feeling any more. Yes, there is more I can do in that regard, but it takes time.
gentle stretching/exercise is also good for us.. not moving at all is bad. There are lots of youtube videos for stretching and gentle exercise for people like us... but the biggest thing is to start SLOW and gradually build... only stretch to the point of feeling it, but not painful. Yeah, i know, everything is painful.. but there is a difference between the generalized pain of fibro and pain from stretching too much.
And dont feel like you have to hold the stretch for the recommended time right away.. many will say to hold it for 30 seconds.. that may be too long to start out with.. holding for 10 might be enough.. but over time, slowly build up to that 30... so, week 1, hold for 10 seconds, week 2 bump up to holding for 15 seconds, week 3 up to 20 seconds, etc... The point is to do it regularly, and build a tolerance over time.

I hope you find some relief but know you are not alone, and we do "get it" here.
 

sunkacola

Moderator
Forum Supporter
Joined
Dec 2, 2016
Messages
2,446
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
I have so much pain every day. I do housework & grocery shopping only for it to ruin my day or days with horrible pain. I have tried every fibro medication to find nothing helps. Now I drink to dull the pain. Nobody really understands what I’m going through. It effects other parts of my life. Relationships & other medical issues. I feel like I’m never healthy. I was diagnosed 10 years ago at 37. I’ve tried all the fibro drugs. They just made me feel worse. I don’t know what else to do….
Greetings and welcome to the forum.
Cookiebaker has given you a good reply so I will just add on mine mostly to support what has been said.
The first thing you really need to do is stop drinking to dull the pain. As tempting as this is (I know, been there), it is only making things a lot worse, guaranteed. Alcohol in more than very scant and infrequent quantities is one of the things that exacerbates fibromyalgia pain.

There are no drugs that work for everyone, so there aren't really any fibromyalgia drugs, only pain medication that sometimes works, sometimes not. If it doesn't work for you, you are right not to take it. The same applies to the alcohol. It is not working for you because you still have the pain and fatigue. So you are only making things worse by drinking.

You ask: What else to do?

You can, as stated above, make things better for yourself if you are willing to take the time and effort, and really it's the only thing you can do.

Please read my post on this and let us know if you have questions. As cookiebaker said, there are no quick fixes, but if you really want out of the state of pain and frustration you are currently in, there is a way out....and you can do it. I am not saying you can cure yourself, but you can make it enough better to have a life. We will support you all the way if you give it your effort.
 

johnsalmon

Active member
Joined
Aug 27, 2022
Messages
59
Reason
DX FIBRO
Diagnosis
00/0000
Country
AU
State
NS
i had constant exteme pain till I changed doctors and am now on Pregabin Capsules at 75mg twice a day . Stopped the extreme pain but still can get some pain which I can live with. I also have COPD and Hashimoto's disease
 

Liz G

New member
Joined
Oct 17, 2021
Messages
1
Reason
DX FIBRO
Hi, I relate to everything you have mentioned, particularly the drinking to numb and escape the pain. Lifestyle changes helped but are not always practical to maintain, often life just happens and fibro roars. It took me three years to be diagnosed with Fybromyalgia.

Then, I went on HRT two weeks ago. Game changer! Within days, my stiffness, pain, tingle in my face, fatigue, insomnia, brain fog, anxiety began to melt. I feel like me again. I still have the IBS but it has eased. I would definitely recommend looking into HRT and seeing if it might be a fit for you.

I hope you find something that suits you.
 

Auriel

Very helpful member
Forum Supporter
Joined
Jun 8, 2021
Messages
976
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
🤗 🤗 🤗
 
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