Fm/ms
- Thread starter Joloveme
- Start date
- Status
- Joined
- Jul 30, 2020
- Messages
- 829
- Reason
- DX FIBRO
- Diagnosis
- 11/2019
- Country
- PT
Hi Joloveme,
It sounds like you're having a really tough time - you're in the UK, right? If you want any help navigating your symptoms, don't hesitate to ask here. There's a ton of useful info that you can read too, starting with Sunkacola's pinned post at the top of the general discussion section of the forum. We'd love to hear your story, and are always about if you need to vent!
It sounds like you're having a really tough time - you're in the UK, right? If you want any help navigating your symptoms, don't hesitate to ask here. There's a ton of useful info that you can read too, starting with Sunkacola's pinned post at the top of the general discussion section of the forum. We'd love to hear your story, and are always about if you need to vent!
- Joined
- Jul 30, 2020
- Messages
- 829
- Reason
- DX FIBRO
- Diagnosis
- 11/2019
- Country
- PT
Hi Joloveme,
I'm so sorry you're feeling that way - please don't give up hope. There is always a way through, even in the most difficult of times.
What tests did they do to rule out other possible causes of your pain? Fibromyalgia diagnosis protocols have changed quite a bit over the years, but sadly a lot of doctors are not well-informed, and can be very unsympathetic.
What are all of the symptoms that you are dealing with, and what painkillers have they had you on?
If nobody ever helped you properly rule out any other cause for the pain you're experiencing, then you certainly need assistance with that. Several other health issues can present similarly, and some are curable, while others really need the right treatment.
If, however, you were given a barrage of tests and everything came back negative, then it makes sense to start developing your own fibromyalgia treatment strategy - it's what most of us have to do anyway - so that you can begin to get a handle on your life again. No matter what the doctors say! Everything that we all do to manage our symptoms is good for anyone's health, so giving it a good go won't cause any harm.
The reality is that most people with a fibromyalgia diagnosis don't find conventional treatments helpful. Some do, but they are the lucky few! The rest of us have to figure out the best way forwards, and experiment until we find a great combination of things that adds up to make all the difference.
Fibromyalgia management needs to be multi-pronged, and it needs to be self-driven. So, you need to find the right ways to manage your stress - that could be breathing exercises, meditation, listening to soothing music, whatever helps you feel calmer - and the right way to improve your sleep. You need to figure out how to pace your daily activities, establish a nourishing and healthy diet, and get some light exercise every day. Lots of us find that supplements really help us feel better. Things like GABA, coQ10, vitamin D, magnesium, and boswellia can help - there are more, so questing on Google can be useful! I know it's a lot, but believe me when I say that experimenting and mastering all this stuff can make a huge difference. For me, it meant going from being bed bound and in a lot of pain all the time, to being really functional, able to work, and feeling like my life is my own again!
In all of this, please remember that depression can sometimes be the worst symptom of fibromyalgia. It can consume everything when we're not doing well. The more out of control our illness gets, the harder it becomes to see our way towards a brighter future, but our brains are only tricking us because they're struggling. Just because we can't access that possibility right now, doesn't mean it isn't there, waiting for us to come out the other side. I promise you that you can and will feel better than you do right now, and I really believe that when you find the right strategy to manage your illness, you are going to be able to look back on this moment and feel proud of everything that you've achieved and come through. Please stay in touch - we're all here for you!
I'm so sorry you're feeling that way - please don't give up hope. There is always a way through, even in the most difficult of times.
What tests did they do to rule out other possible causes of your pain? Fibromyalgia diagnosis protocols have changed quite a bit over the years, but sadly a lot of doctors are not well-informed, and can be very unsympathetic.
What are all of the symptoms that you are dealing with, and what painkillers have they had you on?
If nobody ever helped you properly rule out any other cause for the pain you're experiencing, then you certainly need assistance with that. Several other health issues can present similarly, and some are curable, while others really need the right treatment.
If, however, you were given a barrage of tests and everything came back negative, then it makes sense to start developing your own fibromyalgia treatment strategy - it's what most of us have to do anyway - so that you can begin to get a handle on your life again. No matter what the doctors say! Everything that we all do to manage our symptoms is good for anyone's health, so giving it a good go won't cause any harm.
The reality is that most people with a fibromyalgia diagnosis don't find conventional treatments helpful. Some do, but they are the lucky few! The rest of us have to figure out the best way forwards, and experiment until we find a great combination of things that adds up to make all the difference.
Fibromyalgia management needs to be multi-pronged, and it needs to be self-driven. So, you need to find the right ways to manage your stress - that could be breathing exercises, meditation, listening to soothing music, whatever helps you feel calmer - and the right way to improve your sleep. You need to figure out how to pace your daily activities, establish a nourishing and healthy diet, and get some light exercise every day. Lots of us find that supplements really help us feel better. Things like GABA, coQ10, vitamin D, magnesium, and boswellia can help - there are more, so questing on Google can be useful! I know it's a lot, but believe me when I say that experimenting and mastering all this stuff can make a huge difference. For me, it meant going from being bed bound and in a lot of pain all the time, to being really functional, able to work, and feeling like my life is my own again!
In all of this, please remember that depression can sometimes be the worst symptom of fibromyalgia. It can consume everything when we're not doing well. The more out of control our illness gets, the harder it becomes to see our way towards a brighter future, but our brains are only tricking us because they're struggling. Just because we can't access that possibility right now, doesn't mean it isn't there, waiting for us to come out the other side. I promise you that you can and will feel better than you do right now, and I really believe that when you find the right strategy to manage your illness, you are going to be able to look back on this moment and feel proud of everything that you've achieved and come through. Please stay in touch - we're all here for you!
- Status
