What changes would you like to make i... - Fibromyalgia Acti...
What changes would you like to make in 2020 to improve your health and quality of life?
Please select all that apply:
Just to have the constant worry taken away from the 'battle' with the DWP in obtaining my justified medically benefits !
I understand as I claim benefits too. Have you sought help from FMAUK Benefits Advisor and/or visited other websites that may help support you like Fightback, Turn2Us etc. Would you like the link to the post with all the info? 
Try to improve awareness.
It’s difficult to achieve more exercises when in pain,even though you know that’s the answer
Have you been referred to a Pain Clinic? If so, what meds have you tried ?
I too want to lose weight but find it hard with my pain levels . Taking pain killers and still have pain. I am currently taking gabapentin and tramadol paracetamol ,naproxen, and still have pain. When I move. Arthritis and fibromyalgia in my legs is the worst my illness have ever been. I been through pain
Management and still pain over come me. But just to keep going .
I completely agree. It's a vicious circle, one to which there seems no break. If I could simply have a few days with no pain or exhaustion, I could begin to implement a new regime into my life. Even proper regular meals and minimal exercise. Sadly, though I'm too often in excruciating pain and exhausted from lack of sleep to have the moticavtion, let alone the ability to do this. I've tried so many things over the years. Nothing works and I'm beyond frustrated with it all.
I'd happily settle for one day - hell a few hours of being the person I used to be - free from pain and full of life, but I don't see this happening empty time soon. Sometimes I wonder why I bother at all...clearly there is still some pride in this used up, washed up old body of mine.
Have you ever tried Capsaicin cream prescribed by GP ?
That cream at high dose plays havoc with my sensitive skin. I have had lower dose prescribed but it clearly has build up affect on my skin. Never mind at least it's not addictive like pills?
Yes always best to start low and do a patch test, wear gloves and be careful near sensitive areas. But as you say it is fairly natural way of reducing Substance P (excitable to pain) which DR Clauw says people with Fibromyalgia have 3 times the amount compared to healthy people.
Get my hip replacement done!
I really wish the very best for you and hip surgery. The best thing I ever did is say yes to my new hip in 2019. Just do your exercises when you are in hospital and beyond. If youswim get swimming ASAP after op it is great theraphy. Lastly Bio oil for the scar!
Thanks, my husband had his done a couple of years ago so we are well used to the process and exercises. Unfortunately I am sufficiently disabled to use a wheelchair much of the time, standing and walking are challenging at the best of times.
Yes please, that would be much appreciated.
Thank you.
John.
Here you go , the FMAUK helpline will reopen on Monday 6th Jan
healthunlocked.com/fibromya...
All the best
I would like to achieve a goal of doing some sort of exercise it has to be well paced in order to achieve this goal. I would like to feel more confident and be more assertive when it comes to having my health needs met
It might sound small but I started with parking further away from the supermarket door so I had to walk that much more. Walked up the road to post a letter, then walked another 50 yards before turning back. It was tough at the start but as I got used to those extra 50, 100, 150 steps I realised they were all adding up.
Yes this is a good way to start increasing exercise tolerance (if you haven't got ME or CFS as this isn't always advisable) I hope you are managing to slowly move more and this continues into 2020
try swimming or exercise biking it will be less temptation to buy food in the water....hahah
Hopefully find a dr that understands and shows compassion and not put all my problems down to fibro this would help me lots .happy new year mdaisy. Xx
Happy New Year to you too! Have you posted about Fibro friendly DRs in your area .....to see if any member here know of a DR that might help you x
Hi didn't know as new to my area I just feel that the dr I have now is not very understanding this also effects my mh. Hopefully I will find a more understanding and caring dr soon it makes you feel better when you have a dr that knows you and your problems this is my goal xx
Yes it’s all ongoing thanks
In addition I'd just like to be understood. Most services I use/go to, plus people I meet/friends/family dont have a clue.
Happy New Year Everyone : )
Happy New Year and yes, it would be lovely if more people truly understand or at least showed some degree of empathy. Did you know that FMAUK can send a medical pack to your GP practice, if you're interested here's the link to do this:
fmauk.org/home-mainmenu-1/f...
Thankyou very much, I'm sure this will be very helpful for the whole surgery!
Best wishes Yvonne
I would like to see in general less negativity towards me for suffering with fibromyalgia, and less pressure from so called health professionals who sit in judgment
My ‘other’ is to survive & beat cancer which I am going through right now. Ready to start therapy to heal my arm & close the surgery site. I will use this in a positive manner to encourage others to check their bodies for Melanoma.
Ebaymama Good luck with your therapy and really wish you all the very best. You are a survivor and that is a huge thing to be positive about xx
I would like to return to work as I've been off work for 4 months. I'm hoping I can be able to just do a few hours a day. It'll help take your mind off the pain.
Hermes123
Occupation of the mind and able to interact with others close to home, loneliness only causes stress. Happy New Year All. Hermes.
I'm waiting to hear back about my p.i.p. It's my first time and the horrors story iv read terrifies me so hopefully in New year things will change for us .
Receive updated, succinct information about the disease and any news of the medical community finding cures and causes.
Hi Zoonie,
I completely understand your drive and enthusiasm, however a few anecdotal accounts do not count as research and as mentioned previously the EULAR Recommendations for Fibromyalgia 2016 does this research (although needs updating but as Des said may be a while) and on a large cohort of individuals.
Research needs proper funding, time and evaluation to make any solid conclusions and for anyone who needs to learn about research here's a helpful link:
healthunlocked.com/fibromya.......
I personally think that over the 7 years I have been on the community I've learnt that what works for one doesn't always work for another person with Fibro, due to other conditions, life situation etc. To conclude in my opinion (not FMAUK) I think that as others have mentioned that interpreting the data could be difficult and therefore answering posts with our own experiences to help others is more helpful .....just my own thoughts on this
Hope this makes
Emma
Sleep
Dear Mdaisy ,
i believe i need to get right with God and if He grants me that Grace to be healed . I've experienced healing many times before and seen others healed after i prayed i have the faith but , I've hesitated over this because a large part of my income is in disablement benefits . However i'm making up my mind to get rid of my car because hardly use it .
So what price health ? If i regain my health i can walk , do my own housework , use public transport do my gardening , paint again , etc etc. I have to get rid of some things i've realised displease Him . Then i can ask with a clear conscience and stop being lazy and take resposibility for my life . I've been getting worse and this descision to get rid of my car has made me think .
If i'm right 20 20 will be healthier . If not its because God doesnt want this . I am 74 after all and though many are fit at 80 odd Christians are not immune from trouble . I do pray to become longsuffering , so maybe the sickness is to teach me that ! Whatever , I will praise Him still for all His many benefits , this forum being one great help to me .
God bless everyone in 2020. KT
..Dear Zoonie,
My alternative therapy is cbd oil which I've been using for over a year now . If you want to try it , Holland and Barratt are helpful with dosage etc . A gp who is sympathetic would help , ( i've just found one in my practice ) over possible interactions with other meds , but you can find that out by googling it.
Now i'm experimenting with more competitively priced cbd oil from Amazon.. ( Another member posted about the best sources a few weeks ago , but i havent been able to refind that ) . It is expensive , but when one is in pain i think one would sacrifice anything . As Mdaisy says you can share your experience on here . The medics call that anecdotal evidence as opposed to research , but if it helps one other person its worth it.
God bless KT
Zoonie also uses this I believe and has a good supplier I agree sharing experiences or collecting poll answers, which are not used as data more of a conversation and based on a small selection of people which has it's limitations as qualitative & subjective info. It isn't research as there is EULAR Recommendations for Fibromyalgia already but it's a little snapshot of the community and what they find helpful
Hi Zoonie,
I understand, admire your passion to do something and know what you mean about keeping the mind busy. I think the best way is to continue what you have been doing and answering posts with helpful info and links....this is really beneficial to the community.
I truly think it isn't a viable option or worthwhile exercise, particularly as EULAR does this already. We have polls on here every so often which people can answer to which things helps them and members can read the past polls for a snapshot of numbers who find something helpful, then try things if they so wish to.
I understand answering every post it is duplicating information, so in this instance maybe we can either do polls we've done before to make a new post about all sorts of coping mechanisms, medications, exercise etc - whilst asking for members participation in these to form an information post. This could be easily shared and pinned with links to the polls .....this is what I personally feel will be most helpful.
Hope this makes sense
Emma
Reduce my reliance on medication.x
Hi Zoonie
I am an Administrator of the community Zoonie and have been off & on for 7 years after previously being the Volunteer Administrator for FibroAction (before merger with FMAUK). Des Quinn, is the Chair of FMAUK who would have final say on these things.
I have mentioned my thoughts to the Admin team in PM and Des can answer with his opinion there. Previously, people could go through the polls but we could make one post of the polls of 2020 if we choose certain questions that collectively may be helpful information. It's just a suggestion and I await his reply
All the best
Emma
Eating smarter is the comment I wish to add. I still have a lot of room for improvement.
This was mine last year & so I started eating Pegan. I can post the link to my post if you’d like it?
I have managed to lose 3 and a half stone during 2019, and feel better for it. Now I have to get moving a bit more to tone up.
Legalisation of medically controlled canabis
Thank you for your kindness:). I am determined to do all I can to heal my arm. Cancer is a bully so will not let it win 💕
Move house asap
I would love to be able to enjoy life,even only by 25% would please me and make life that little bit more worthwhile,but unfortunately I suffer from anedonia, which stops me from not getting enjoyment from any part of my life,especially with my adult children,who basically avoid me as they think I don’t care,by not being super excited when I see them,always on their terms!! But I do get where they are coming from,because I think that there is the case for a person can’t really understand what an other person is going through if they haven’t experienced something similar themselves!? But the irony and annoying thing is that in the USA there are trials being done with the drug ketamine,given through an injection and the results look promising, as the patient that suffers with anedonia,gets relief after 40 mins and the affects last for 2 weeks,but like I mentioned about irony, as it’s in the USA,we in the UK will have to wait years or we might not even get it,especially when the UK government are dragging their feet to even give the CBD medicine to the very poorly children in our country,when even a blind person can see the huge difference the CBD would have on these poor children!! But heyho, what can we do??? ... nothing,while we have idiots running the country!!!
Lastly, I would like to say that I personally think that anedonia is more wide spread than is being documented, as this disorder could be the reason why most of our fellow fibromyalgia sufferers struggle to manage their pain levels,as the reason why I say this is, i really find it hard to find the right level of pain medication and need to take quite a lot of pain meds and need to take them pretty regular,otherwise I go into a level of pain that I will be sitting on my sofa with my eyes closed and just shout random sounds because of basically frustration that I get so annoyed that I know that I will only have to grin and bare it (again irony pops up!,).
Sorry guys,I did not mean to go on a tangent,but it’s all spontaneous,so thank if you took the time to read story.
Find a doctor that understands pain, and get a new mattress!🤣😴
I have already felt a huge benefit from being lighter, less strain on aching joints and muscles.
Try to reach out to other I may have omitted in 2019! Life is too short to forget those who were friends and have drifted apart by illness or geography
I'm aiming to restart the exercise plan that I started last year and had to stop after my car accident in June
I have a static exercise bike and a treadmill, so I plan on doing a couple of mins each day on the bike, and increasing by one minute each week.
Once I'm up to about 15 mins on bike, then I'll start doing the same on the treadmill and aim for 30 mins per day between them both. In addition to this, I will try and walk whenever I can each day - even if it's only from car to the office, or round the supermarket
Combining the extra exercise with healthier eating will also hopefully lead to some weight loss too
I also have a very stressful few months ahead of me, so keeping my mental health in check with also be very important xxxx
Oh I will. Have done it previously, and went from walking 50m to completing a 5k ( though no plans to do that again )
Just need to find the motivation to start xxx
Over the years I've become a bit of a recluse so my 2020 thing is to start going out again not only to the doctors or shopping but to visit friends and do more with my children. It is hard when you only have a certain amount of energy a day and in pain. I miss my old life but it's time to start embracing this one.
Advocating for better communication between Doctors and Specialists, with patients being given more control over there healthcare and there possible choices.Eliminating the fight or flee astigmatism,by enhancing our quality of life through finding and being given proper information upfront about our conditions from our providers. Being told truthfully about our symptoms we present with to Professionals, Which would help us to better understand ourselves and others around us.Quality of life by having those in charge of our health recognise and help ease frustration and confusion during office visits.To better open communication, we will not feel helpless, but empowered to move forward. blessings to all. the storm
I voted 'other' as well as increasing activity.
I was quite active until having a second child. For some reason, although I'm up after them almost 24/7 and cleaning up constantly into the night, I've gained a huge amount of weight and it's not going anywhere. This is terrible for musculoskeletal dysfunction but I can't get away to do any plotted exercise; and am so tired on a regular basis I'll fall asleep in the middle of the day with little warning, generally a few times a month. The rest of the time I'm simply an upright zombie after a few hours wakefulness. I'm curious about sleep problems but I can't figure where to begin explaining it to my new GP.
... Which leads me into my 'other':
I don't have a job and desperately want to make some sort of income that's my own, that I can control, that I can use for my own needs; save if I want, donate if I want, buy books, repair my floor when I want, call a handyman or go purchase shelving or lightbulbs if I need -- to pay fees so I can have memberships to whatever gyms or museums I want ... But I'm totally reliant on my husband (who is ADHD and cannot manage money, by his own admission) and he won't get an accountant or doesn't know how to. I got myself stuck years ago by quitting a job with a company that wasn't doing well, so that itself was reasonable, but it was right before my husband got laid off unexpectedly. There was no money after that for me to invest into entrepreneurship (as I had planned). After a few years and small jobs for others I got farther (and further) away from where I had been, and, after I had kids, I realized, I was in a serious predicament ... I have a number of comorbids -- I have since my early 20s and before -- but I could work around them when I didn't have kids and was competitive in my wide skillset. Now, out of practice, a housewife for years, no money for household help of any kind, falling asleep without warning, I'm not sure where I could make a dime, much less enough for what I think I need.
The pity is that I have a really good understanding of my thresholds and they really haven't changed. They aren't much different than the hours or schedule of any normal human, but the way things are, just the one or two small differences mean I need everyone behind me (including my husband's employers) to support those one or two needs that are out of sync with today's common expectations. I can't be pushed beyond agreed upon limits then guilted into compliance, which is what life seems to be about for so many people. There's just nothing there when they push me, and I can't recover no matter how I try to talk myself into it.
OR, I could do what I always envisioned, which is literally mind my own business and take it all by the horns and work for myself. In order to do that, I still need to get my family to listen to my needs and work with me to find a way out; such as, make it a priority to let me sleep longer and work the defined hours I need. I need to find someone to give advice on the lifestyle and job *I* want and need, not what other people want, and, I need time and money to invest in myself -- all of which I've been fighting to get, but I keep falling flat. Usually, I just don't have the energy at the end of the day to even ponder, much less strategize. Meanwhile, I'm throwing my body out of whack every other day because my kids and husband won't own up to the idea they've got to clean up their own stuff even if they "don't have time," or "meant to and forgot." They've got to do their minimal chores and attempt to control impulses. Like I don't ever forget stuff or have other things on my mind?? I have to come up with coping mechanisms, too, and further, I have to change them constantly, so I feel reasonable asking them to do similar. I get being a kid, I get being a parent with a bad memory, I hate playing this tune, but that's just the way life is, sympathy or no. If I had more muscle, the throw and recovery cycle wouldn't be so bad, but I damaged so much the second kid around (the midwives wouldn't listen when they should have been sending me to PT, and by the time my GP sent me postpartum it was too late) I need the kind of focused muscle recovery work gardening or lifting random things won't provide.
I need to figure out how to earn just a bit of income without blowing what energy I have so I can take charge of things that need to get done. Or maybe it's about finding the right coach. Or perhaps I should focus on communicating my vision to my husband and explaining myself in another way (and asking myself what gets in the way). Maybe it's about boundaries. Maybe it's about drawing boundaries at home, clarifying my personal vision and mission, *and* supporting physical health all at once. <--- All that stuff is the 'other.'
take the stress out of going to drs and hospital,get a better communication with the medics ,more understanding of my health issues. mad Margaret
All of the above 😎😅
My main aim is to effectively manage my time, energy and pain in order to successfully get through an OU course I start this year so building in exercise, pacing and practising reiki are gonna be crucial to keeping pain and stress levels at bay - everything crossed I can muddle through without landing setting off another flare!🤞🤞
My 'other' comment; Kick myself into gear and get moved! I have a warm bungalow awaiting me in Wales, but I am cold, and sinking into depression here.
I'm trying to compress my life into the essentials, but too cold to move my body half the time!
Finding the energy is the main thing, and the sheer weight of the responsibility of packing up this house, finding the essentials and the memories is proving very hard.
I was interviewed for a new post in December (after a few rudderless years of trying to live with fibromyalgia) and as a result am starting a new job this month. It ticks many of the boxes in this survey and I was determined to roll with the things I can do rather than fret over the things that I can't do. The work is not physically demanding and the hours are very short - I'm not even sure that my body will allow me to get through it - but I was very lucky in that I was interviewed by a decent human being. My employers are fully aware of the condition and the need to constantly manage it; so hopefully, with a bit of trial and error, it's going to be possible to retain the position. Hopefully there will always be hope and round holes for round pegs and the occasional reminder that there are still some good people out there!
And if I can't make it work I'll feel better for having tried...
To put time aside to carry out exercises and mindfulness that I should do.
Even though it hurts when I exercise - simple as walking, it hurts less. I feel like crying on the beginning but I know it will get better. Doing my gentle movements on a daily basis since I attended my 3 weeks pain management, did improve my pain. When flare up comes is not so bad. So exercise does help.
Little movement is more than no movement at all 😘👍😊.
have just finished having accupuncture,my choice instead of painkillers,i just wish that it was more readily available and for long,i had 12 sessions. Been told now that I cannot have more for 6th months. If I was on medication I would have it indefinitely,so why is accupunture or any alternative therapy and drug free treatment not readily available for as long as needed not just in the short term? In my case, I rely entirely on self help for pain relief,plus any alternative therapies On the NHS that I am offered,surely if patients want to avoid drugs they should be allowed unrestricted access. I would be much happier if I was not pestered to have drugs,and had more choice of alternatives. madmargaret
I have a few other health problems and feel my fibromyalgia has taken a back seat and never discussed with my doctor. My pain is all over some days people don't understand this illness as its not visible to the eye.
Be less sleepy.
become IN-tolerant of the meds that help me feel normal and give me motivation
I'd like my family to be more aware and supportive of how I manage my fibromyalgia and how I need to pace myself. I don't conform to a standard day because I'm a natural owl. I've improved my fibromyalgia enourmously by adapting to my 'inner owl' instead of trying to be a lark. My family though are 'concerned' because I get up late etc. and they don't think I'm 'looking after myself'.
It would be lovely if people, medics, colleagues friends an d family could understand what it's like to live with fibromyalgia! There are still lots of people who feel it's made up even medics, so many people say it's a state of mind! Exercise more, do mindfulness!! You were ok yesterday how are you tired,Ill, ach now! I am fed up justifying this horrible illness!! Even I don't understand why I have it, my family can be the worst with not understanding at times. My daughter in law is a rheumatologist my son a neurologist and although sympathetic it's short lived they say more exercise , but I do try, it makes me not like myself and feel like it's in my mind! Colleagues keep suggesting its menopausal but I we nt through menopause 16 years ago! Negative comments drag me down. I really wish more information could be available in the spotlight so that people could realise what effects fibro has! 
I forgot to mention that polls are merely a rough idea of what works for people with Fibro and cannot be classed as reliable data, as no way to get gender, age, other conditions etc - meaning there’s so many variables that it is a guide more than having any accuracy.
Sorry but I personally think this kind of data collection & research should be left to EULAR. We can do polls but it isn’t a reliable way to collect data but it’s interesting nonetheless.
Disillusioned with constant pain, brain fog, extreme fatigue, poor sleep in particular etc, trying to change a few things once my pip has been sorted out. If I get this I can set us money for gym, physio. Not yet sure if I get it and awaiting their reply. I feel being hit by tons of bricks 🧱 by a wide range of conditions. Thank you for fighting for our cause 🙏🏻🌺🌸
I just want to keep it simple this year.
I don't live in a supportive environment regarding managing my FM and my life is very chaotic and stressful, so I have to be realistic about what I can achieve.
I don't have any goals per se but for me it's just a case of maintaining, and hopefully building on, healthy habits as I gradually start to gather momentum in my ability to look after myself due to self care. It's hard to create an upward spiral of good health because the downward trend has an organic cause, Fibro - and so much can set it off. It's very easily aggravate to start a downward spiral but very hard to relieve and start to climb back up, especially when there's not a supportive environment.
But trying to maintain a healthy diet and exercising within in our limited capability due to Fibro is important. I try to have a healthy breakfast with chopped fruit and yoghurt (soya) but I won't always have the energy or patience to prepare it, or due to irritable bowel won't have the appetite, so I'm not always successful in this, although I was today, which funnily is the day I've started to come out of a flare, so I can definitely relate to already needing to be well enough in the first place to look after oneself. Even if I'm not successful with the food part, I take a multivitamin and two other supplements everyday.
I also try to walk everyday with my dad and the dog without fail, so I can at least say I've been out of the house and have had some exercise. I would like to start swimming again but there's been some personal stuff that's prevented me from that which I'm hoping can be overcome soon. Walking every day and swimming maybe once or twice a week will probably be enough to start with and then once I'm fitter maybe introduce some other form of exercise. Obviously I would like to lose weight but if I manage all this that will happen anyway.
This year I've also started a general every day diary just so I can account for and keep track of each day. I find it's easy to lose track of time when sick and dealing with brain fog so this is one way of managing it. I don't have the time and energy to write in great detail but trying to write a bit each day or every couple of days, should help.
But I can't set extravagant goals or over complicate things as I'm dealing with a lot already. I don't have high hopes or expectations, I just want to take each day as it comes. I feel like that's all we can really do with an illness as unpredictable as Fibro.
To be honest my main goal is just making it through another year - that's hard enough for me.
Xx
Spend more time with family
Similar to Jo-Lyn, I would like to have the relentless, never ending stress and poverty of fighting for financial support from our supposed welfare system (they seem to forget we pay national insurance to protect ourselves from destitution from ill health leading to loss of income) STOP and be treated fairly. I am going through second PIP tribunal in three years. I've had seven reviews in twelve years for DLA/PIP/ESA. I went to renew my PIP end of last year and DWP said they lost my renewal application and forced me to start a fresh claim. My PIP stopped, my Severe Disablement Premium in my ESA stopped, so my council refused to pay my Housing Benefit, leaving my rent unpaid since 6/1/20 and I have been told tribunal waits are minimum of one year. This means it could take two years from applying for PIP to receiving any money I could lose my sheltered council home while trying to sort out this mess. I live alone and have no other source of money.
And they dare to blame our pain as psychological, caused by depression!
Emegrate somewhere warm who has a better grip on virus like NZ
Just imagine Mdaisy, when you made this pot, we had no idea what was about to hit us🤔
To feel less isolated and make friends, also to find an affordable Tai Chi class to join
It's difficult to address what you want to achieve since you don't know what you're going to feel like from one day to the next
It’s too dark and painful for me to see the light at the end of the tunnel. I’m really sorry
recover eyesight Stop edema reverse insulin severe diabetes prevent peptic ulcer disease halt autoimmune diseases correct/reverse all spine diseases and injuries really this is wishful thinking. But I can still be hopeful and prayerful about all of my now 68 health issues. I keep looking for my body replacement if I can ever find that ever elusive Body’s R Us store. 😂🤣😂🤣😂
I’d like the ability to change from my present surgery to one with at least one GP who understands fibromyalgia and what effects it has on other conditions.
