Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Hi everyone
I just wanted to ask a question I have about 'building resilience' but due to fatigue and fibro-fog not sure if it will be very clear what I am trying to ask. Apologies in advance.
I've been wondering if building resilience is ever going to succeed with Fibro?
The only treatment Ive really had since being diagnosed with Fibro back in 2007 has been for my spinal injury and TBI after the accident which sparked all this off. I only got this treatment because accidents are covered by public Accident Insurance here in NZ, and their main goal was to get me 'back into the workplace' (and off paid compensation).
The professed goal of this 'rehabilitaton' was to 'build resilience' through supported 'work trials' and slowly increasing the hours of work each week.
However, despite trying several times, this approach did not work with me, and looking back now, I think it was because of the Fibro.
I have felt so frustrated, a failure and guilty for years now because I have not successfully managed to sustain any kind of paid employment for more than a few weeks or months. What typically happens is that I start feeling better at the prospect of earning money again and go in with gusto, take extra painkillers and try my best to 'get back into it' but end up either catching a lot of viruses and bugs, lapse back into extreme fatigue again, or the employer simply says I am 'not suitable' for employment.
The migraines and mind fog make it extra complicated on top of not being able to sit in an office chair or use a desktop computer without extreme pain.
Every day office procedures I would think nothing of feel insurmountable now, and this has got worse over the last two years.
What worries me is that each time this happens (about 9 times now) its like I slide backwards and it takes me weeks to recover back to the level where I was before starting the job. Its the same if I have a 'big day' of activity or exercise (a shopping expedition or travel) it takes 2-3 days to get back to 'normal' after any kind of exertion or demand. It seems to be getting worse rather than improving.
Is this age? (I am in menopause now) and Ive also just recently discovered my original MRI report which describes a disease of the spine which worsens with age (explaining the increasing pain and weakness in my arms and hands)
All this has importance for my future income prospects (I am a divorced parent with a teenage daughter to support). Every few weeks I have to report to my doctor for a medical certificate so I can apply for a sickness benefit. I am on a temporary allowance at the moment because my doctor has written I might be able to return to paid employment within 3-6 months. I am just realising that this is becoming less and less likely as my pain and fatigue are getting worse not better, and just getting through the housework in my four level home and coping with the voluntary teaching work I do takes all my energy. I can't seem to leave the house for more than 2-3 hours let alone apply for a job where I would have to 'perform' and sit in an office chair and be functional.
So - my question is - do we keep pushing through our pain and fatigue to 'make' ourselves more resilient ? or accept our limitations without feelings of guilt and failure ? Do I now apply for long term disability?
Its a lot of paperwork and bureaucracy but I don't know how else my daughter and I are going to survive financially. Thanks for reading this far,
I just wanted to ask a question I have about 'building resilience' but due to fatigue and fibro-fog not sure if it will be very clear what I am trying to ask. Apologies in advance.
I've been wondering if building resilience is ever going to succeed with Fibro?
The only treatment Ive really had since being diagnosed with Fibro back in 2007 has been for my spinal injury and TBI after the accident which sparked all this off. I only got this treatment because accidents are covered by public Accident Insurance here in NZ, and their main goal was to get me 'back into the workplace' (and off paid compensation).
The professed goal of this 'rehabilitaton' was to 'build resilience' through supported 'work trials' and slowly increasing the hours of work each week.
However, despite trying several times, this approach did not work with me, and looking back now, I think it was because of the Fibro.
I have felt so frustrated, a failure and guilty for years now because I have not successfully managed to sustain any kind of paid employment for more than a few weeks or months. What typically happens is that I start feeling better at the prospect of earning money again and go in with gusto, take extra painkillers and try my best to 'get back into it' but end up either catching a lot of viruses and bugs, lapse back into extreme fatigue again, or the employer simply says I am 'not suitable' for employment.
The migraines and mind fog make it extra complicated on top of not being able to sit in an office chair or use a desktop computer without extreme pain.
Every day office procedures I would think nothing of feel insurmountable now, and this has got worse over the last two years.
What worries me is that each time this happens (about 9 times now) its like I slide backwards and it takes me weeks to recover back to the level where I was before starting the job. Its the same if I have a 'big day' of activity or exercise (a shopping expedition or travel) it takes 2-3 days to get back to 'normal' after any kind of exertion or demand. It seems to be getting worse rather than improving.
Is this age? (I am in menopause now) and Ive also just recently discovered my original MRI report which describes a disease of the spine which worsens with age (explaining the increasing pain and weakness in my arms and hands)
All this has importance for my future income prospects (I am a divorced parent with a teenage daughter to support). Every few weeks I have to report to my doctor for a medical certificate so I can apply for a sickness benefit. I am on a temporary allowance at the moment because my doctor has written I might be able to return to paid employment within 3-6 months. I am just realising that this is becoming less and less likely as my pain and fatigue are getting worse not better, and just getting through the housework in my four level home and coping with the voluntary teaching work I do takes all my energy. I can't seem to leave the house for more than 2-3 hours let alone apply for a job where I would have to 'perform' and sit in an office chair and be functional.
So - my question is - do we keep pushing through our pain and fatigue to 'make' ourselves more resilient ? or accept our limitations without feelings of guilt and failure ? Do I now apply for long term disability?
Its a lot of paperwork and bureaucracy but I don't know how else my daughter and I are going to survive financially. Thanks for reading this far,
Part of the problem may be age. My mom spent 45 years as a nurse, and for every decade you have aged, add a week to full recovery from anything if ou are healthy.Or if the gym fascists tell you to increase reps or weight every week, give it an extra week per decade before moving up. EXample, if you are 20, give it two weeks plus what doc said.... 50, an extra five weeks. If you have underlying issues.... you need more time. I have this with my recovery from my 2011 Epic Fall. My epilepsy and endometriosis have limited med options and added pain and inflammation, respectively.
In your shoes, I would get a second opinion on the ability to work given the MRI, and see about job retraining to find something that will not cause such pain. Telecommuting, even. I have friends here in the Us who work from home on their computers doing customer service, so they can raise the kids and earn money without spending money on daycare.... But I am not aware what opportunities are available in NZ. (IIRC, that is where ou live, right?)
Do not give up. Ask the docs, see what they think, and maybe ask if you better start that paperwork now just in case.
Hugs, Leo
You can rebuild stamina after anything, including FM, was supposed to be my leadoff sentence. Argh. Crawling back in my mountain den now..... tail lashing....
Interesting that you wrote:' Office work requires sharp focus and multi-tasking' and that is the issue! Before Fibro I was managing an office of 20 architects and had some really challenging jobs. Since Fibro (and painful spine degeneration) Ive slowly gone down and down through the ranks attempting increasingly simpler jobs (filing and reception work) and even that I couldn't manage after a few weeks.
Once I get into an office situation again I get overwhelming anxiety and this makes the brain fog worse. Since I have lost so many jobs now my confidence is so low. Some of the reports Ive had say it is due to the TBI (Traumatic Brain Injury) from the accident and that I have 'mild dementia'.
I have been trying to re-train as a TESOL teacher since 2009 with varying levels of success. I am about to complete a certificate gained from doing one year of voluntary work teaching refugees but its been very slow to get there for me. I have applied to do CELTA several times but have been told that even 'normal' and healthy people find this course gruelling so they would not like to take students with brain injury or health problems. Also it costs thousands of $ which I don't have.
I have been advertising for a year now for private tutoring work and academic editing work from home, a few replies but no one wants to actually pay me. I did have a regular weekly student but she fired me in favour of a more qualified tutor (I cried over that).
Ive done a bit of editing of Masters Papers for friends in Europe, I think I can still perform OK with this but of course they do not pay me.
This sounds ridiculous, but I have lost my 'stamina' and confidence so badly I now find it too overwhelming to go out there and try and apply for jobs or market my 'abilities'. I know that I get frequent debilitating migraines and often make mistakes, so that makes me even more reluctant to keep trying. A friend of mine is in a similar position with mild brain injury, not being able to think clearly or multi-task any more, we share a lot of frustrations, but she has a loving husband to support her financially and all her kids left home.
I have made an appointment with a new doctor this week (the previous one had no idea and even admitted this) and hoping she might have some advice as to where to go from here. I am preparing some paperwork now to try and apply for the Disability status.
Thanks for your comments.
Physical resilience/recovery from an incurable illness is a whole different thing. We can partially rebuild at times our capacity to engage in activity if we bear in mind we are still ill. With firo we must pace our selves, be moderate.
I learned I must take multiple breaks during the day so the next day won''t be worse. I call it 'pay to play' - the longer we are physically active the more we will have to pay for it later. I am fortunate to be in a situation where I can take these breaks.
Your illness is not your fault, and your fatigue and pain are not something you can apply will power to wish away. Part of emotional resilience is acceptance.
I dearly hope you can start being kinder to yourself so you might realize your own obvious strength.