Hi all, I'm new to the group. This is a good way to while away my insomnia. I was diagnosed with degeneration of the spine when I was 11. It ended my dream of dancing for a living. I remained quite functional most of the time but the clock was ticking on having a family. We had our daughter in 2016 and that's when things got bad. I found out that Fibromyalgia can be triggered by a traumatic event, so coupled with my previous problems I began experiencing pain in all of my joints, swelling to the point where I couldn't get shoes on, severe tiredness and the inability to sleep (not easy with a newborn), numbness and pins and needles, very itchy skin. I take co-codamol and ibuprofen 500 but it doesn't seem to touch the pain. Any advice welcome on pain management and mental health. I try swimming but I ache the next day.
New and struggling: Hi all, I'm new to... - Fibromyalgia Acti...
New and struggling
Morning Koala l am sorry to hear your story, what i know now , you must keep pushing your doctor to get the right help. Also Enjoy your lovely child, uggy x
Thank you for your advice. It's so easy to give up when it's a different doctor you see each time and they all look at you as if you are crazy.
Hello...my GP has put me on Duloxetine 60mg. It has helped with the depression and anxiety to a degree, and has definitely helped me to cope with the niggling smaller pains. Tried to come off of them, and realised how much they do help. Naproxen only when desperate and a strong co codemol again when desperate. I am lycky to have my adult sons on hand to help. Try to get as much help as possible and ask your gp if you can be referred to the pain clinic for help, they offer a great counselling service as well as physiotherapy and pain management. Fibromyalgia certainly is a whole new way of life and acceptance of that will help you. Hard thing to come to terms with, it only took me 6 years of fighting it🙄😂. Good luck x
Hi and a warm welcome to our community. Here you will find information support friendship and laughter too. You can find general information on fibromyalgia at our main website fmauk.org and read our patient information booklets at fmauk.org/publications
Firstly, remember that what works for one person does not necessarily work for another - so it can be trial and error to find what works for you. Also, my experience is based on fibromyalgia alone, and does not take into account other conditions.
Medication - the recent NICE guidelines may result in you only being offered antidepressants such as amitryptilene or duloxetine. Although not in the guidelines, gabapentin or pregabalin are also prescribed. Paracetamol and Tramadol at common pain meds. Opioids are not recommended for chronic pain generally.
Pacing is key to managing symptoms. Pacing activities helps you to avoid the boom and bust cycle where you do too much activity then flare up symptoms. Pacing allows you to do activities /tasks with rests in between. Larger tasks should be broken down into periods of activity with rests in between.
Exercise/activity. Keeping moving and as active as possible is important. Lack of moment leads to stiffness and muscle weakness, which subsequently leads to increased pain. However, it is important to do activity at a level which does not push you into a flare. Start small and slow and build up gradually.
Other things which may help are heat /cold, complementary therapies, mindfulness, meditation, distraction,supplements etc.
Talking therapies such as cbt can be useful in teaching you coping techniques for how to live with a chronic health condition.
Thank you Hazel for your reply. I suppose it's just a case of going through the list of possible remedies and seeing which works best for me. I hate that I used to be a full steam ahead person and now I feel like I'm going at a snail's pace, sometimes even backwards. Every activity I have loved has become almost impossible, so now I need to reassess, find new hobbies and goals that are more attainable and maybe find a job that is suitable to my limitations. Really glad that this community is here for support.
Yes, it can be really frustrating trying to find out what works, what doesn't.... Then throw in that it might work one day but not the next.
Keeping up hobbies and interests is important - is there any way you can work around current interests so that you do not need to give them up completely?
Not really a way to work around most things. Cooking and baking are becoming hard work. Will have to trade in my LeCreuset soon as they are just too heavy to pick up and my wrists and elbows are getting really weak. Using the electric whisk can be painful so I need to get a stand mixer. I really miss dancing (Zumba mostly) but that is definitely out of the question now. Going out for walks and gardening are also wiping me out. I did get to finish a book this week, which is promising. I chose a comedy style book to try and boost my spirits. It did have me laughing out loud, which I think we all need. Thank you Sarah Millican. It's an opportunity for me to find something new.
Hiya hun I've just had my 4th child and I have a horrendous flare up I also do not sleep more than 3 hours a night and my brain is still tikking so its not rem I would suggest speaking to gp about a sleep aid its so important to get some sleep atleast if I don't sleep or get stressed im at my worst xx good luck also dark room no phone lights x
Hey Bakermissy 77. I was always told the worst form of torture is sleep deprivation. I have tried quite a few things so far for sleeping. The best thing to help me unwind are my roll on sleep oils (I also have ones to boost energy). They were a present when I had my daughter. Was sceptical but they do work most of the time. I also have a brain that doesn't switch off, so keeping a notebook and pen by the bed to write down what's bothering me can help. I have also tried boring audio books, white noise apps, warm milky drinks and meditation. I find that the struggle to get to sleep and stay asleep is mostly caused by pain and discomfort. It hurts to roll over and sometimes sharing a bed with a toddler on those 'bad nights' doesn't help. Nobody likes being cranky due to lack of sleep.
Yes exactly its a torture hun I take a medication called quitiapine to kelp me sleep with out it I wouldn't get 3 hours xxx I hope u find a sleep aid of some sort xx im up with newborn I feel ripped to bits with what feels like a broken back Its came back with avengers since I gave birth the fibromyalgia how did u cope x?
I didn't cope. I had a breakdown after having my daughter. Really went off the rails and ended up on anti depressants. I am still not dealing with parenthood very well. She had severe colic and wouldn't sleep lying down. I spent most of my time bouncing her in a baby wrap and I couldn't take the painkillers I wanted because I was breastfeeding. I really hope you find a solution to your back pain and sleep deprivation. It takes the fun out of being a mom when you are not at your best. I think it alters your memories of the events happening as well. Keep going, you can do this!!
So true I to had nervous break down after I stopped duloxotine abruptly im sure u are doing amazing cuddles sing songs read books ,a child requires a mothers love and im sure your doing amazing don't beat your self up we didn't ask for this horrible pain condition xxxxx hope your takking pain relief now just two a day helps take edge off for me xxxxx
Just a thought but have you checked your thyroid, B12, D, folate and ferritin?
Karen
Thank you for the suggestion, but all my bloods came back normal. I was originally hoping it was rheumatoid arthritis (a few years ago now), but it was in too many places for there to be much of a chance. One of the reasons I haven't been back to the doctors for a while is I got fed up being poked and prodded. I had a lot of that when I developed my back problem when I was younger. I sometimes need to stay away from them for a while. They can make you feel very frustrated.
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