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.
Emma Emmerson: Why I'm raising awareness for my daughter
At the age of 18 my daughter Molly was diagnosed with Fibromyalgia. For me, this wasn’t too much of a shock as we had fought for 4 years to get a diagnosis of some kind for the constant pain, she was in. For me this was the worst part fighting for a reason behind how she felt. It took so long that it really impacted her mental health and she started to think she was imagining it. So, in some ways it was a relief to get that diagnosis.
Then the thought process starts - How will she cope with the constant pain? How will she deal with being so limited in her ability to exercise? How will this affect her career? One thing was certain this wasn’t going away but it wasn’t life limiting so we had a huge positive there to start from.
In the last 12 months, Molly has been increasing her exercise little by little in the hope that one day she will be able to ride her horse or attend dance classes again. She chose to continue her accountancy studies which is difficult with the fog but she is fortunate that I have a practice so if she is struggling with the exhaustion, we can work around it. Socialising takes its toll on her and whilst she does go out with her friends you wouldn’t find her in a nightclub at 3am.
Jenny Timms: How heat can impact my fibromyalgia
When it comes to seasons like many, I used to look forward to the summer months where I could enjoy the sunshine by lazy days in the garden sunbathing, gardening, daytrips at the beach enjoying an ice cream whilst the sun beat down on me or else I would track the sun by going abroad to a hot climate, that was until I developed fibromyalgia.
Today I am finding myself doing the opposite, wishing that we have a cold spell all year round, why, you must be wondering, well the reason is that those long-awaited hot days now cause me to sufferer terribly!
As the temperature rises so does my distress because my skin feels like it is blistering burning all over, I cannot even bear cloth next to my skin and trying to find a comfortable position is impossible because any areas of pressure feels raw and prickly.
More Articles...
- 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
- Kelly Bisgrove: My experience with fibromyalgia
- Amber Price: My experience with fibromyalgia and why I set up a support group
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.
