Hi everyone. I'm 39. Mother of 3, and suffered undiagnosed for I would say 2 years. Now diagnosed with fibromyalgia and hypermobility syndrome. Live in Middlesbrough.
I can cope most days with the pain but for me it's the chronic fatigue that makes my life so hard. Also the dizziness, and breathlessness at doing simple things like hoovering, walking upstairs.
Sleeping is horrendous due to joint pain, and my legs always feel so heavy, and numb.
I enjoy swimming, cycling, as it loosens my stiffness, but sometimes after I can suffer big time.
I'm on duloxetine 30mg, and sertraline 50mg with a review in 3 weeks.
Have physio also.
Joints crack like a musical instrument it's so loud... have chronic headaches
Single mother also of 3.... (hubby passed away) so having this condition really effects my energy levels.
Does anyone work ?? What jobs can you manage to do ?? I find standing now so painful, and also sitting down makes me in agony....
Google ; spoon theory
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ALISONJ82
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Oh you poor thing you sound so much like me. It's difficult I worked right up until the lockdown as a carer then a home help even had my own business. So being unable to work is really hard for me. I am also a mother of 3 but lucky for me mine are grown up even though they live at home.I take 60mg of duloxatine but I also take numerous other pain meds to.
Unfortunately you will find that just about any position held for more than a short amount of time, will cause pain. We seem to 'set' if we hold a position for more than a few minutes. Keeping moving, even just a few steps, will help I find.
One of the things which sorta helps is to do a little work for a few minutes, then rest, or do something in a different position for a few minutes, rest, go back to the first thing, and so on. I find that helps me to keep going, otherwise, if I stick at something, I find myself really hurting and having to quit much activity for a longer period of time. By flitting from one thing to the next, it stops me seizing up! ( I wonder if that's why Fibro UK uses the butterfly as a symbol? )
Google The Spoon Theory. It really helps you to make sense of how your energy drains through the day, and it also helps to explain to friends and rellies, why you can't make a certain activity, because the sheer act of getting ready will leave you incapable of going out!
Some days , often if you have overdone the exercise or work the day before, you will find yourself totally exhausted. I call is spoon overdraught, it means you've borrowed from the next days spoons and are paying the price!
On these days you have to treat yourself gently.
Then there is the Flare Up. Often this can be triggered by something like a cold, and by pushing yourself even only to your normal limit, will really make you want to cry, take to your bed and hide from the world!
Talk to your doc, and get a sensible medication regime started asap. If you have concerns about a certain medication, ask advice from your pharmacist. I find they understand their drugs far better than doctors.
It is important to keep some exercise going (not necessarily the gym). Anything will do; walk to the shops, browse the local market, go for a coffee, wander slowly around a museum, walk the dog, just keep moving. Doesn't have to be fast, the idea is to keep weightbearing, as the less you move the less you can, muscles shrink, you lose Calcium from bones, and without realising you can end up with Osteoporosis.
Don't take to your bed, or you lose muscle and calcium even faster.
Oh dear, I've written a wall of text! Sorry about that, but as a former nurse, it comes naturally to give folk as much knowledge as possible, and having been confined to bed for 3 months once, It took me weeks to get out of the wheelchair.
Wonderful advice😊Totally agree. The less you move the more you hurt. And If you need to take a complete rest I would say make 24 hrs your maximum for bed rest. If it just means sitting up in a chair and walking to the bathroom and back do it.
Laying in bed for days on end does nothing but weaken the muscles. Then you get more pain and you end up been able to do less and less.
I do speak from experience. I have had fibro for 40yrs and I went through the not moving and spending many days in bed. Looking back now and not knowing any different I think to myself what a fool I was. I agree you must keep moving slowly and with plenty of rests in between xx
Wow you have a full schedule sole parenting even if you were well,we all feel your pain here and in difficult circumstances:(hugs to you:)On the subject of work I was a carer for many years and always worked,then I gave it up to nurse my parents at their home till they passed,now just the thought of getting up at 5am and on my feet for eight hours scares me,I know I would not get a job as I say myself I would be unreliable now,I've also got insomnia so imagine what state of be in sometimes I felt guilty about being on state help for a good while but now I've come to terms with it and I do get by and that's all I need If you really want to work you could work remotely from home?alternate sitting,standing up and even lying down,focusing on something helps with pain,your concentration goes there and many people with fibro can't concentrate like they used to.
Also get the kids to do a little more if they can,I was fully trained in how to use the Hoover at ten years old,I had my own pink duster too!🖐fully explain what's happening to you and what it's like sometimes:))
Dear AlisonJ82, I must say how sorry that I am that you have found yourself in such a difficult situation. It is not easy for any of us living with Fibromyalgia but to deal not only with your health conditions, children and the passing of your husband seems incredibly hard. Like everyone, I have used a variety of medications over the years to try and counteract the daily condition but also the more frightening ‘flare ups’.
It took me many years to acknowledge that if my ‘mental health’ was under strain it would have an adverse reaction on my Fibromyalgia. Somehow the stress anxiety and depression exacerbated the physical pain.
Duloxatine disappointingly (anti depressant) was unsuitable and led to many side effects. However, the use of Cipramol seems to have not only lifted my spirits, but also given me quite a large relief from my physical pain.
‘Managing’ you condition through knowledge of what creates the more difficult times is essential - but only possible if your life style allows it. Therefore work can become an issue. Being kind to yourself and removing the pressure of feeling that you must/should keep everything perfect in your daily life puts enormous mental strain on you and your physical body. Therefore try to not worry needlessly over the unnecessary essentials and concentrate only on what is important.
I have found that exercise should only be undertaken in very small quantities. Moving is essential - daily gentle stretching or small walks (if possible). Again no unnecessary pressure/strain.
I’ve got the same problem with fibromyalgia & other health problems I’ve been suffering from headaches and sleep for along time which caused depression I’ve been on steraline & gabapentin &amitripltline & many more tabs which they all help but I don’t have any little ones to look after & I find I can’t sleep or headaches on a daily basis but we all have our own medical problems and we just have to get on with life as best we can & im tried a lot & got no get up & go I do my back & shoulder exercises & walk every day even though I’m on the slow side most of the time. The best thing a can say is keep going don’t give up & if you need extra help talk to your gp who should beable to put you in the right direction good luck
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I felt guilty about being on state help for a good while but now I've come to terms with it and I do get by and that's all I need
If you really want to work you could work remotely from home?alternate sitting,standing up and even lying down,focusing on something helps with pain,your concentration goes there and many people with fibro can't concentrate like they used to.
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