So I have been lurking for a day or so on here, not quite knowing what to say, however I have developed a pressing question I feel I would like some feedback on from all you fellow fibromyalgia sufferers if possible-
have you found since first being diagnosed and getting older your fibromyalgia has got progressively worse? For me specifically the older I have got my symptoms are more intense, and I feel eventually I won't be able to walk
I also feel more exhausted and my flare ups if you can call them that last longer and longer each time and I relapse faster each occasion
It may just be me but I feel fibromyalgia will eventually forcefully dominate my life. By the way. I am 32 years old, I am sure those would relate me to being 95. I feel it
I can strongly identify with you and have often pondered this. I believe fibro is a progressive illness. My symptoms have worsened and I've picked up new ones along the way! I'm 49, used to be super fit, outward bound instructor, horses, rugby etc. Yesterday I went out to lunch and my thighs and knees playing up today! I only walked short distance from car to table and back! The medical profession however insist it is a non progressive illness! However, I'm not impressed by what many of them know or want to know about fibro. Very little research is being done and big pharma making a fortune from painkillers and antidepressants etc.
Contributory factors that lead to worsening could be less activity and more sedate life style and side effects from medication. Depression is also an issue, I deny I'm depressed but I know my self worth as not being a doer and provider has had a big hit on me. As has not being able to do the things that I loved. I also spend far too much time on my own and in my head. So a combination of these and progression would be my answer. Interested what you and others think?
Hey HartleyHare thanks for your input here. It is interesting how you say and refer to once being full of life, super fit and I imagine so full of energy. To now where things are perhaps so different? I relate totally.
I do think also yes more research is needed into FM I am finding as the years go by I am yet being shoved with more and more medication but feeling worse and worse. I fear my life stopping when some doctor tells me I can no longer work. I will feel my freedom has been totally removed.
I am also depressed so very very depressed, it's the pain and the fatigue well sheer exhaustion I cannot ever describe. It's the weekend naps I am forced to take at the age of 32 I mean surely people shouldn't need to nap to relieve of the pain and get some rest??
Hi, I had to stop working some five years ago. I loved my job and it was extremely well paid and interesting. Unfortunately I did not think ahead and have policies in place that I could have afforded. I thought I was invincible and would never have a chronic illness!
Afternoon naps, baths, physio, Meds, alternative medicines and whatever else it takes to relieve pain and exhaustion are the order of the day. Don't ever feel guilt for doing something that relieves these and helps you live as normal life as possible. In fact planning them in is essential.
Hi HartleyHare - sorry about your job, in all honesty I am scared of this happening to me. I work my arse off even more now so I can save and save and save because I fear for the future. I too thought even at 20 I would be infallible and never have anything like this.
yeah that's the story of my week during the week when working I drug you beyond belief as well as fighting my depression and the pain then come the weekend I feel half dead and I get angry with the pain i guess I have been suppressing all week to get through it.
I do understand we're in the same boat! One thing concerns me though is that your not pacing yourself but actually putting yourself under even more pressure. It's like pressing the acelerator when you know the cars going to run out of fuel, yet if you drove at a slower steadier pace the fuel would last longer and travel further. Not saying your wrong just something to chew over! Perhaps re evaluating your goals and expectations from life. Mine have changed drastically and are still changing at the moment. I lost my lovely Victorian home, which I could have prevented by putting realistic goal posts in place, the right insurance policies and not leaping from a great career job into the grass is greener( and worth a lot more!) into an independent Business Consultant. I didn't realise the safety net I had given up in return for instant gratification!
Today I focus on getting my fifteen year old through exams and a decent happy life. Helping others where I can and trying to keep busy. I am still restless and unfulfilled but I know I will find my niche eventually!
Keep doing the next right thing and you can't go far wrong. That includes being good to yourself!
Hi HartleyHare I so appreciate your honesty. I guess because career wise at 32 I still have time to progress and develop further. I was told not to attend university because I was too ill but I went and I graduated. As soon as I was diagnosed I pushed it away and thought right this shit ain't going to beat me I have my whole life ahead of me. Of course now a little older but still not old I am thinking more of what will the path be when I turn 40 and so on
I admire how well you have done to come to terms with your life and how it changed, I need to accept mine will change. I am sure your 15 year old will much appreciate you being there and also you helping others. I try to help others as best as I can.
I know I have to eventually just pause and think more about my routine and my future and I have done to a degree but I fully cannot get into that mindset it doesn't "seem right"
It is difficult. I am told by my GP I am the most complex non terminal case he has. My pain psychologist says that I am far too positive and it's getting in the way of me accepting my condition. I refuse to use my wheelchair and would rather take the falls and bumps even though a few have been rough. And here's me telling you about pacing 😂😂😂. We all have to cope with it the way we can. I have two speeds stop and go. I often over do it in good days and pay for it afterwards. Perhaps doing a bit each day would be a good idea and I have more balance and not so many bad days. It sounds logical my brain accepts that. But my will says fight against this as hard as you can, live your life to the full deal with pain later. I'm sure I drive those around me nuts! Life is precious I want to squeeze every last drop out of this one! X
I feel the same, I have had depression for a number of years which is made worse by having fm. I too I'm trying to get my head round how to enjoy life with the symptoms of fm. I love holidays but am finding that they are getting harder to enjoy. I cannot walk very far now and used to love walking. I really feel for you as I am 60 so you are far younger than me. I soo hope you find a way to enjoy your life to the full.
You put that so well Patrick. I too believe this to be a progressive condition which slowly takes away life as we knew it and I personally have become someone different to the person I once was.
What do the medical profession know? Some of them still don't believe its real.
Your so right Joolz. But the government or British Medical Association have a lot to answer for. Each illness has a set of standing instructions on how best to treat it, physio, mental health, medication etc Fibro still does not!
They are called NICE guidelines and provide GPs and hospital guidelines. So at the moment it's hit and miss on which GP and hospital you get. I've been lucky, in my experience the younger ones are more receptive. But it's like the government isn't taking fibro seriously
I have had fibro for 30+ years and my first reaction was to say yes it does get worse. But I have to say I agree with a lot of what Patrick just said. I think there is a lot of contributory factors other than fibro to why we may feel worse as we get older.
I was in my late 20's when i first started been ill. I turned 61 in June. I have to use a wheel chair any time i leave my home since i was in my early 40's But I do think the less you do the worse you will become. use it or lose it springs to mind. Plus as we age it is normal to feel more aches, pains and get other long term illnesses. But the worse thing imo is to become fixated on the futer.
It is not a given your fibro will progress not everyone becomes immobile and bedridden. Not everyone will need a wheel chair. There is no way of predicting the futer. But one thing I have learnt from experience if you think something will happen it usually does. Try and live each day as it comes. You can not change the futer what ever it may bring. But you can enjoy the here and now. I wish i knew that 30 years ago I would have done a lot more with my life and I don't think I would have been as immobile has i am today. xx
Hey Diz it's such an unexplored avenue I think the progression of fM and seemingly it is not one consistent pattern for all. You say to do what you can now that is why I fight my way to work day in and day out I push all my anger and all the pain away praying it won't reap revenge but of course eventually it does and effectively ruins my weekends because I am in agony and so exhausted then the depressive cycle goes on and on.
I hope you get lots of support
I think it concerns me as I have many health illnesses and I am 32 so I dead for example when I get to 50 because when I was 18 I was nothing like I am now x
Awww you won't be dead at 50 {{hugs}} believe it if I have made it to the ripe old age of 61 LOL with out medication you'll make it to 50. I think if i was to give my honest opinion I would be mugged lol But I do think over the years many people have suffered more since doctors started handing out so call meds that help fibro. And no I won't be drawn on the subject lol it is just my opinion. I hope you have a nice evening xx
I am on 11 different medications for fibryo and other stuff so it worries me that it's so much at 32 let alone when like you say your body naturally gets older and begins to falter anyway I am really concerned.
mind you all that money the NHS make out of my prescriptions eh?!
Oh wow 11 just for Fibro ! May I ask if you don't feel any better why do you take them? I'm not saying you shouldn't take them definitely not. Just interested.
No need to reply I understand if you don't wish to. But I think you have a valid point about all the money been made out of selling these meds. When there is no actual pill out there to treat fibro not yet anyway xx
No my lovely 11 medications for all different health conditions. I don't just have fibro. I find they help then I have to increase the strength or go on something stronger because they lose effectiveness. For some conditions I have if I don't take medication I become very ill. And then I couldn't work so it's a case of having to
I just hope one day there will be something to eliminate fibro maybe not for us but for future generations x
I am sorry I misunderstood Put it down to the fog or old age either one works for me lol I am sorry you are suffering with so many things at such a young age xx
No problem Diz maybe I didn't phrase it right. it's ok people suffer more than me. But I have days where I am so on edge I just think I cannot do this anymore I think though this can be expected when juggling so much it wears you down x
Lot of wisdom there Mo. I have my wheelchair but worry once I sit in it that will be me confined to it. I know the pain team think I'm mad and obstinate, their not wrong!😂 But the worst fall I had was in my kitchen when I facepalmed the floor and snapped off three upper teeth! Don't know what happened just went straight over. Outside my stick and walls etc support me and parachute training and falling off horses has taught me how to roll! One day it will come just not yet!
As you say trying not to worry about the future but focus on the here and now is crucial. As is focusing on what we can do not what we can't do. I can't claim to have come to terms with my fibro and other illnesses but I'm working on it! I'm not bitter just bemused, I guess someone had to get it and I got the ticket. I try to practice Mindfulness a tool prescribed by the pain clinic to keep things in the present moment, not regretting the past, fearing the future just focusing on the here and now. It's all we've got in reality. It works when I apply it but it's like a discipline you have to work at it.
Sharing my hopes, dreams and fears on here helps me a great deal. Even well meaning friends and family don't have a clue what we deal with day in day out. X
Hi Elise, I feel MY fibro has progressed - but that's different from saying it's a progressive illness. I'm pretty sure mine started when I was in my 20's, over the years new symptoms appeared here and there and I went to docs a lot but all tests came back normal so I thought this is just how it is. 20 years later and I fell on the stairs banging up my knee to an extent I could barely walk - exercise became impossible. I was less active by this point anyway as I'd left my job to become a full time carer to my son. My symptoms kinda snowballed from here. I'm now 46 and I HAVE to pace. I too worry about the future to a certain extent but I also figure worrying about it is not going to help me in the present. I make sure I keep moving - whether I want to or not. I stick on a pain patch and my compression supports and do what needs doing. And then I die quietly on the sofa for a while. Rinse and repeat.
So ... I feel it progressed a bit naturally over time and then a LOT when I was injured and stopped moving. But that's just me. It works differently for everyone.
Ok ... my understanding of whether or not fibro is a progressive condition. In medical terms it is not progressive because there is no empirical (I think that's the right word) evidence that it gets worse over time... for example; a condition such as rheumatoid arthritis or MS has evidence to show how the disease progresses.
This is completely different to us personally feeling that our individual symptoms have progressed or got worse over time. There may be several variables involved as to why we have got worse - and it could be different for each person.
Personally my fibromyalgia is like a roller coaster with times when I've been a lot worse but also times when I've been doing better.
Early diagnosis; good education on how to self manage your symptoms etc all help xxx
Most definitely. 10 years ago on holiday I would have been out all ay and into the evening. Now I build in rest days and still sometimes have to curtail an activity I would also have made the journey into an adventure. Now, I'm glad to arrive. Pacing and planning has become so important. This is also true of work. I was effectively bullied out of my last job due to "excessive sick leave". My present one is ok. Its a lot less physical. My electric bike is a godsend but I can see the time when I will have to give up even that. I'm a bit older than you but fatigue is a big part of my life too.
As Patrick says, there's a vicious circle of the less you do, the less you can do. and its no good the armchair experts saying "get up and get out". That's what we'd love to do. And yes it messes with your head. I feel some side issues like IBS are worsening but they may be doing so without fibro in the frame XX
I agree with you both Elsie and Hartley x I've definitely worsened since diagnosis and also unable to carry on working x as for flare ups, I've rarely have any relief from pain x
Hi Elise - I've only had fibro for a couple of years, though have a number of other conditions as well. I did have a bad accident a year ago and broke both my ankles - at first being confined to bed felt ideal for my fibro. But as soon as I started to move about again it began to feel worse - and the more I did the worse it got. As a consequence my ankles haven't really recovered - the X-rays look ok but they feel as if I've just broken them, and the tendons in my feet and calves are incredibly tight and sore. Just been sent back to physio where we are effectively starting again. I'm not sure - nor is the medical profession - but this is probably attributable to the medical profession.
But, like hartleyhare and others I really believe in being positive, living each day as it comes and making the most of my life. I watched my 16 year old daughter skydive for the first time yesterday, and as well as thinking how amazing she was I also really wished I'd done that when I was still able. At 32 you are still really young (I'm 53), and it saddened me a bit to read that you spend all your time working then are inevitably too exhausted to do anything for yourself at the weekend. Of course I don't know all your circumstances, but for anyone (but especially those with these disease) it's really important to make time for enjoying yourself - try to have some fun. And if your fibro is progressing maybe think about whether you could work part-time - although you'd earn less now maybe you'd be able to carry on for longer rather than burn yourself out.
Btw when I broke my ankles I developed a completely different view of wheelchairs - I have RA as well as fibro and ending up in a wheelchair seemed like the worst thing that could happen. Of course with my ankles it wasn't permanent but the wheelchair felt like a lifesaver, and although now I resist it as much as possible it helps when I really need it - airports, trips round shopping malls. I'd much rather use it and be able to get out and see stuff than sit at home. Xxx
Im with u 100 % on ur post. Fibro is a horrible ssyndrome. Sooooooo debilitating. Take Care. P.s I'm 43 and often feel like an old woman that's ready for the broth pot 😉 Xx
Hi Elise what an interesting string of posts you have started - maybe all our GPs should read them. My Fibro is definitely the roller coast type- some of my initial symptoms have all but disappeared or I am managing them better - then I get a new one out of the blue. I cant recommend enough trying or succeeding getting your sleep patterns sorted. The pain doesn't feel so bad if you are not exhausted all the time. I rarely have the need to nap during the day at the moment - whereas a year ago it was part of my life when I wasn't working. I have been about just about give up work at 60 years old - had prepared for it as I had 2 or maybe 3 chronic illnesses in my 30/40s which I got over Including CFS. I am holding on to the idea that Fibro isn't necessarily progressive but doesn't help you get over other stuff quickly ( 8 weeks of bronchitis isn't good at the moment) and of course age related illnesses may get you to. But I have to say I do come off drugs as soon as I feel I can because I believe for me they may make me feel worse over time - having had that experience in the past. Good luck finding the regime that works for you - I know we are all different. Annx
Yes I identify with this. I'm in my late fourties. Cycles 20 miles a day most days. Took my mum shopping. Went out socially. Visited my grown up children. Worked full time. Took on an array of outdoor activities. Four years ago I had a sore foot. Now everything has gone. I have to save my energy to struggle on at work. I feel like my whole life has been ruined. I struggle with everything. That's me though. I'm sure other people are not like that. I guess it is severe for some people and less severe and manageable for others.☺
Hi yes I think fibromyalgia is progressive - if you let it - when I was first diagnosed I just wanted to do everything I did before - and fight it - and I also took the drugs my doctor prescribed and my body and mind became painful and confused - so for the past year I have stopped my drugs because of the side effects, I am on a very pure diet I go to aqua at least 3 times a week ,, I walk Finley everyday - sometimes a short distance - but I make myself get out - through my activities I have made several friends who are a great support - I try I try to be as positive as I can and I do the things I love (the things I can manage) ie a little baking , a little watercolour painting, but I do socialise quite a lot - so I don't overthink my illness too much - I pace between everything and I sometimes have to nap - I avoid stress when possible (the difficult one) I am lucky I have supportive people around me who have read up about my illness , researched and tried to help - I feel so much better than I did because I am trying to "obey the fibromyalgia rules" - Pace, de-stress, good diet, exercise, rest - I know doing this in life is difficult but its the only way to live with it comfortably - I do still have the odd bad day but I just rest for a couple of days and then pull up - but I was luckier than you to only be diagnosed in my 50 "s. good luck. To everyone Neese. x
I understand and agree that some can managed quite well with Fibro if you 'obey the Fibromyalgia rules' . However, just wanted to point out that sometimes you can't help but 'let it' win. I was bedbound for 2 years and was able to rehab using a holistic approach for 3-4 optimum health (ie walking but nowhere near healthy but managing) and then got a virus that knocked me for six...... that put me way back and bedbound ever since.
So just wanted to mention sometimes it can be completely out of your control.....
I have had fibro for nearly five and a half years (diagnosed at 19; now 24) and I have definitely noticed that my symptoms have got worse; the pain that I thought was unbearable before is now pain that I am longing to have back again as it was so easy!! I have come off all of my tablets though and for the first time really since I first experienced it I am feeling the full pain that fibro has to offer. I feel like it's the tiredness that really gets me as I want to be out and doing stuff and having fun and I can't and that's really tough! 💗💗
I feel the same way. And I'm 41 now but six years ago I almost lost my daughter because I was bedridden and in a wheelchair. But I'm pretty good now coming from that!!!
You're supposed to feel 95. Welcome to the club. It will be up and down. Just breathe and ride it out. Don't give up hope. It's a different life, and it doesn't have to be all bad!!! You'll be old soon enough!!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I would also have made the journey into an adventure. Now, I'm glad to arrive. Pacing and planning has become so important. This is also true of work. I was effectively bullied out of my last job due to "excessive sick leave". My present one is ok. Its a lot less physical. My electric bike is a godsend but I can see the time when I will have to give up even that. I'm a bit older than you but fatigue is a big part of my life too.
To the Wives, Husband's, Girlfriends, Boyfriends and Partners of anyone who has Fibromyalgia ....
Just wondering
Just wanted to say thank you.
Does it take longer to recover?
