Steph: My experience of fatigue
The article below was written by Steph and sent in to us about her experience with fatigue.
"Everyone gets tired. Pain is a part of life. Your forgetfulness might be age or stress related. Funny how everyone seems to have fibromyalgia these days....
Are these sentences ones you’ve heard since your diagnosis? Do you struggle to explain your symptoms to people? If so - me too. I think it’s easy for people to discredit a pain they’ve never felt, or assume tiredness is a natural occurrence. Fatigue and being tired aren’t the same thing, but that’s not always easy to explain, is it?
As a mum, I try to liken my chronic fatigue to that of pregnancy fatigue, it’s the only analogy that seems to do it any justice, however if you’re trying to explain this to someone who’s never experienced pregnancy, that won’t resonate either. So here’s another depiction. Imagine your limbs are laden down with lead, then imagine trying to run through treacle with said limbs, imagine living your life in slow motion and no matter how much rest you get, you’ll never get enough to speed up. Does that sound more accurate?
Ian Taverner: How Fibromyalgia has impacted me
It took a very long time for me to be diagnosed with fibromyalgia. For years I was back and forth to doctors, specialists, surgeons, therapists, you name it. Operations, invasive procedures, injections, misdiagnosis, medications galore, but nothing helped. Fibromyalgia Grief
The yearning for days gone by, nostalgia for previous abilities. Friends that no longer understand you and memories of your old life. Memories that feel like they happened to someone else. Not little old you.
So, what is it about living with Fibromyalgia that makes you’re feel like you’re suffocating in a cloud of grief? What are you grieving for? I’m grieving for spontaneity. I’m grieving for the way my body used to move. I’m grieving for my brain’s alertness and pain free limbs. I’m grieving for my premedicated self. My body, but mostly I’m grieving waking up and feeling well.
Not knowing how you’re going to feel every morning can be a hard pill to swallow (pun intended) Waking up, and for maybe a split second you feel as though you’re fine, you might even feel spritely, excited for the plans you made on one of your good days, and then you’ll try and get up. Trying to get out of bed uses energy you can’t spare and even drinking your morning tea feels challenging. Maybe like me, you have a school run and the thought of it alone leaves you exhausted. Or maybe also like me, you have a job and getting through the days is becoming more impossible, but still necessary, because you just can’t afford not to work. Or maybe you have nothing to do but even doing nothing is exhausting and you still feel as though you’ve ran a marathon.
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Harvard Article - CBD for chronic pain: The science doesn’t match the marketing
We have a lot of conversations about CBD and cannabis and these have increased since NICE started looking into it. The culture around it is changing as well to make it easier to talk about it in terms that accept that it may have medical benefits and we should at least be looking at this.
But there are a lot of claims and suppliers that are promising the moon when there is a lack of evidence and people are trying to take advantage of the current lack of regulation within CBD oil.
So it is positive to see articles like the one below from Harvard University that try to give a reasoned view of the current status and although it is American in its view there is a lot of information here that is relevant within the UK.
FMA UK supports the calls amongst other pain / health charities that there is a need for more research that establishes not only efficacy but safety and other drug interactions.
To read the article, click here.
FMA UK Statement on NICE draft guidelines
Guidance on chronic pain is to be welcomed but we have concerns with the recent draft guidance and these have been echoed within our community. We have concern about working treatments potentially being withdrawn from patients without replacements. Increased pain, symptom flareup as well as withdrawal symptoms are not what chronic pain patients need.
We understand these guidelines have introduced chronic primary pain as opposed to chronic pain. The lack of clarity of what conditions are considered within these categories and where the line is between the two will leave scope for misjudgements.
More Articles...
- Emma Emmerson: Why I'm raising awareness for my daughter
- Jenny Timms: How heat can impact my fibromyalgia
- Foggy's: Celebrating 10 years as a support group!
- FMA UK Volunteer Vacancy - Berkshire & Buckinghamshire
- Billy Ray Mansell: Exercising whilst living with fibromyalgia
- Janet Horton: Why I volunteer for FMA UK
Highlights
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- National Helpline 0300 999 3333 (10am - 4pm Mon - Fri)
- Benefits Helpline 0300 999 0055 (10am - 12pm Mon, Wed and Fri)
- Complimentary information booklets for doctors and other professionals (fully referenced)
- Books and videos
- Website Contacts with legal specialists
- Conferences
- Local support group and helpline contacts
If your Health Care Professional needs some education in fibromyalgia you can request that an FMA UK Health Professionals Pack is sent out to them. All we need is the name of the Health CareProfessional and the address of their practice. We will then send a pack to their surgery addressed from us to them.
You can request a medical pack using this form.
You can find a Support Group near you by contacting the Regional Coordinator for your area. If there does not happen to be a support group near you then maybe you can join with some other members and set one up. Support groups provide a social benefit as well as the opportunity to share tips on coping with fibro. They come in all shapes and sizes and we are often told how they have helped people.
