I've just joined so wanted to say hello! I'm not quite sure how this works yet, I haven't joined something like this before. I was diagnosed with Fibromyalgia a few years back now, along with hypermobility and I'm currently being investigated for EDS as well.
I'm still coming to terms with how these conditions impact my life, I'm fairly young still and I don't know anyone else my age who suffers from the same conditions. I find the mental strain the hardest part to deal with, having to explain why my energy levels are so much lower than other people my age and how awful the mental fog can be. I hate the feeling of not being able to comprehend or express myself how I would normally, it's so hard not to feel like you're loosing your mind a little bit, particularly when under stress. I feel like there's no one I can talk about this who would understand, I'd love to feel like I'm not alone and to share with other people who understand.
My question would be: How do people deal with the mental side of a chronic condition? What have you found helpful/ struggle with?
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Fibro_bro
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Hi @Fibrobro - it's good to meet you. I actually have the hypermobile type of Ehlers-Danlos Syndrome + neurological problems (Chiari 1 Malformation) that affect a few of us.
I became interested in fibromyalgia over 20 years ago, when I didn't know what I had, & there are some similarities with fibro & Chiari (& subsequently many misdiagnoses).
I have never sought a fibro diagnosis after getting diagnosed with EDS, but have read several medical papers that say the pain some of us with hEDS have is most likened to fibro, & I certainly have the exhaustion, & light & noise sensitivity. It took me a long time to learn to pace myself like many with fibro, & that helps to an extent.
Mentally it likely helps if you have an interest or hobby; anything which distracts you, e.g. I read, watch films, listen to music, & enjoy pottering in the garden when I can. I'm a great believer in gentle exercise, & also find mindfulness & visualisation helps.
I use the following diaphragmatic or abdominal breathing daily, which helps with relaxation, & reduces pain & stress. Please see: nbt.nhs.uk/sites/default/fi... Hope some of this helps.
Hi, and welcome. There is a lot of good information on here which will help. I think it also helps if you know what services are available in your area. Bit of a postcode lottery but if you have services like MIND, they can help with your mental health and other things too. Stop you from feeling isolated. There might also be support groups in your area for EDS and Fibromyalgia.
It must be very difficult not having people your own age that understand. There is a booklet you can send for that explains all about Fibromyalgia for people close to you who want to understand what you're going through so that they can best support you. It's on this site somewhere.
Looking after all aspects of your health, pacing and taking time to figure out what makes things worse and what keeps things on an even keel might be useful.
I have been in touch with MIND in my area recently, when I started to feel low and isolated. I've booked myself in for a session with a support worker to find out how they can support me and I did a free course in mindfulness, which is about staying in the moment, taking each day at a time and becoming more aware of things going on around you but not letting them distract you while you meditate.
I also noticed that I found it too much of a chore to cook for myself and had started just eating convenience foods. I decided to put myself on MINDs waiting list for cooking sessions. It's free and they provide all the ingredients. I will be able to make healthier meals again.
The people on here are very friendly and helpful, lots of experience. Don't worry if you don't get many responses at first. After a while, you'll get more. People are on here at different times of the day and night, if you're one of us that has difficulty sleeping too.
Hi, I was ill all the way through secondary school, university etc but I wasn't diagnosed at the time. I was at boarding school too so I kept getting detentions etc bc they thought I was lazy. Very difficult trying fit in and keep up with everyone!
I studied art at university too so it was one long running drug and drink fuelled party where our tutors were partying too, I couldn't do it. Took a long time to find a more comfortable place for myself, as I discovered I couldn't do social life and study, only had the energy for 1 so I had to choose. Finding our limits and working out our priorities takes time and is important if you don't want to continually crash and burn. I had 4 nervous breakdowns in my 20s/30s I'm 45 now and haven't had one for about 10 years so I think I might have worked it out now!
I'm hypermobile too, I've broken my ankle twice and my wrist twice. I do a lot of sport that requires learning better proprioception in an attempt to stop breaking things, ED's was considered for me too but I think if I have it it would be mild.
Hi Fibrobro. Be assured that everyone here will understand totally where you are coming from and there will be lots of useful sharing. - I haven't long been in this myself but it makes such a difference to talk to people with similar and all of them are engaged in a valiant fight. All of us go down at times into flares and depression. And rants! And why not. There is much public unfairness and ignorance out there. - Someone here coined the term 'Fibro Warriors' and that is exactly what we are. - Practical suggestions for depression - I use St John's Wort tincture or capsules to fight it - more so in winter. What you need to really understand with this is about managing serotonin. If you are on Pharma remedies from the doc SJwort may not be suitable or entirely safe. At separate occasions Rhodiola is sometimes helpful during the day but absolutely not to be used at the same time and not after 4pm. These are two powerful herbal remedies for short term use mostly. I do herb teas and currently using spanish saffron, (shop around for the least expensive) - eight or nine strands in a cup of hot water as somewhat depressed because I've been trying to tackle necessary changes in the house and getting exhausted and weepy with it. - (If flare, will have to stop.) - I think you have done brilliantly to get through Uni. Art is a creative subject and will be a blessing to you in many ways with all the conditions you have. Let your paintbrush express what your muscles have to say. - I tell people straight out about my brain fog now and am getting them to join in the game of helping me 'get the word'. It opens the way for them to talk about their probs as well. Most people want to talk to other real human beings and be heard. We are all ahead in that game. Battle on! xx Jo
I have been here a while, still a bit vague how things work, at the moment not to fussed about the brightness of the screen. Been like this for years but I am going through a bit of a phase. As for the hypermobility I can touch my wrist with my thumb about which there was a bit of whispering but I can not do the splits so that's my dancing career over. It used to be much easier but has stiffened up with age though I still get asked to demonstrate sometimes, never been bought a drink for my performance though.
Hello and welcome, I have been on the forum for a few years, it’s so well run and lovely members too talk too , lots of understanding and empathy. There are some younger members. I tend to take each day and not always plan too far ahead, ,medication has really helped me deal with anxiety and the lows but it took time to get the right sort , trial and error but I got there in the end xx
Welcome Fibro_bro, I agree with Yassytina. Taking each day as it comes, with all it contains. Making plans too far ahead doesn't work for me. I have found T'ai chi helpful as it has gentle, meditative movements and I feel better after a class. My tutor is very easy going and puts no pressure on me at all.
Hello👋 I haven't been on here long but everyone seems so supportive and understanding. I find it hard dealing with it at a young age too, so I completely get where you're coming from. I keep a journal to jot down my thoughts on my toughest days and try to focus on taking each day as it comes. I'm on a waiting list for a pain management programme, too
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Chicken or the egg?
Hi, Long Time Lurker
Fibromyalgia and Nausea
Recently diagnosed.
