FLARE UPs😩

Hi! Please let me know how long or how often you feel you are in this mode....have been unfit for work for 5/6 weeks...(GP asked me several years ago if i really needed to work!!!!) (Thought to myself, well if you want to pay me ...) I only do 3 days now but even that is exhausting but need/enjoy the social side to work....

Without the nerve block appointments feel i would be going back as unfit and then off again and wondered how others on here cope?

Bea

25 Replies

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  • Hello Bea6

    The thing about flair ups is how everyone reacts differently to them. However it is generally felt they are caused when you do too much.

    One of the first golden rules about managing chronic pain is pacing. Hard as it is when you feel OK and want to take advantage of that. But pay back creates a flair up and hard to treat.

    If yours has been going on for some weeks it must be time to reconsider what you do and how to cut it down.

    It may not necessarily be work but maybe traveling, home life or even less than ideal conditions at work for yo.

    Sometime a GP will give you a very strong injection to break the pain plus short course of anti inflammatory meds. Taken with great care.

    x.

  • Hi my GP won't give me an injection as feels it needs to be done x-ray guided so referred me to specialist as following MRI results, the scoliosis was only diagnosed in June in lumbar region but feel this OA flare up is worse because of the nerve root narrowing and never has such intense burning pain thru buttocks and down legs.....

    Am trying to stretch as much as possible and walking for little while as don't want muscles stiffening up. Have been taking naproxen along with other meds but body/brain knows when 4hrs is up...and next dose please...think i am also suffering with insomnia as am quite an anxious person and really want to feel better...Thank you for caring

    Best wishes

    Bea

  • Noooo not that sort of injection!

    A strong muscle relaxant as in pethadine.Duty Doc used to carry them in their Gladstone bag but not any more.

    As I said it will relax muscles and that is why you re in so much pain. Anxiety tightens muscle too which doesn't help.

    x

  • I also agree with Bananas5!! Whenever I get a reasonable day, I tend to try and fit everything in or as much as is humanly possible, only to be sick the very next day with breakthrough pain (flare-ups)

    My gp wont give me anything for my breakthrough pain. In hospital they gave me Oramorph, she insists that I am already taking a heavy dose of pain killers. I disagree!

  • Yes I do the same as i don't know when the next energy day will be but then its payback (flare up) for few days following on top of the norm pain....I am rather surprised that your GP prescribes Oramorph but hasn't sent you to Pain Management Clinic...how long have you been taking this?

  • Hi bananas right and paceing crucial .you should get a steroid injection just take it easy .Can I ask if your retirment age yet .Don't have to answer .just with all the help you may qualify if you stopped work it stops at retirement age

  • Hi. have another 5years to go to Retirement...so not an option at the moment...have not been offered a steroid injection as have to take blood thinners due to mild stroke few years ago and have to be off the blood thinners before any injection - thats what have been told but seems different advice from patient to patient...

    Bea

  • It does seem right about blood .Hi I would consider wot gp said about work .if you qualified for esa and pip you really have to do It soon .before retirement age and you get it for life once your retirement age usually no reassessments. once your retirement age you can't get esa and pip only saying this cause you may qulafiy .my mum just made it by 1 year got it for life so something to consider if you can get sick line from gp .and there is volunteer groups Tec out there . good luck either way.

  • Sorry Ajay575 but you are a little inaccurate with PIP and ESA.

    ESA is for working age people only once you retire yo change to your old age pension.

    So far DWP no announcement has been made about PIP and retirement.

  • No .you have to apply before retiement age or you cant get pip and ese .thats wot i meant .with bea gp suggesting maybe give up work.she has a few years to apply .

  • You get attendance allowance if you apply once your retirement age .a day before you get for life

  • Sorry that has been stopped now for new claimants.

    Government cuts

    x

  • Terrible . more reason to apply for anything before retirment age or you get nothing .

  • I am not up to date with ESA etc etc...it seems a minefield and quite nerve wracking to have to go thru home assessments/DWP assessments...have heard they have really brought some people to near despair...

  • 😩

  • OOPS sorry for the silly emoji...am tired not sure why thats there!!

  • Is there any way to work from home?

    One thing I have learnt, is that it's very hard to stick to a schedule. Life's much easier if you can roll with the punches, rather than fight the flare-ups.

    I used to rent a desk in a shared office, as it good to get out of the house (cabin fever), but I now work from home. I cannot remember when I last worked 5 days in a row, let alone stuck to a 9/5 schedule.

    I planned to get quite a bit done today (catch up over the week), but my body had other ideas..

  • In my workplace i have colleagues who work from home but i am part of a team that cannot do this although we have an ethos of Agile working which states its not where you work its how you work...maybe i need to start a dialogue but feel too exhausted to manage this at the moment.

    Thank you for your support here!

    Best wishes

    Bea

  • Hello CRPSSUCKS... I am also a CRPS victim. Recently had a burst stimulator fitted and although I am more stable on my feet with it than with the Tens version, I am experiencing a lot of pain in my affected areas, much worse than before the burst stimulator surgery. I am facing daily terrible pain in my feet and the burning sensation play hide and seek with my fingers, legs, arms ankles, and toes. Not to mention the terrible back pain. I am a real mess. As for the surgery itself, I am finding that recovery is taking much longer than expected! I knew it would be long but I guess, I am thinking more about what PEOPLE are saying about me in my own head! It is terrible I do agree.

    Anyway, I am on JSA and really want to WORK FROM HOME. I want something that is going to be worthwhile in terms of improving on my existing JSA allowance.

    You mentioned working from home and I wanted to ask if you would mind sharing with me what you do? I have been looking for something that will take up my slack times when they do come along. I am averaging about 2 days per week when I could do some kind of work from home.

    Please, please let me know what you do and also how I might get involved or where I might access information about working from home.

    Thanks in advance

    Jannett

  • Hi Jannett..i actually don't work from home but my Accounts Colleagues do...i think if you have any Accounts experience or Book Keeping this may be something to consider.... I just have (40+) admin experience but i need the social interaction as am not a happy person to be on my own for long periods...

    I always check the local Freebie paper at weekends and sometimes there are companies who only want someone to work a few hours a week....What are the rules on how many paid hours you can work without affecting the JSA?

    Hope you having a better day😍

    Bea

  • Bea thank you for your response

    I think its 16 hrs without affecting JSA. Not sure but I have heard those numbers before.

    I have many years admin experience also and in particular the Human Resources field. Given the time away, I think I would have to do an update to be of use to anyone.

    I am working on being better. Many good healthier wishes for you too!

    Jannett

  • Hi Jannette, I'm a software developer. I did it before the injury, so I'm kind of lucky to be able to work from home. I'm currently working in building a service, which takes me out of the loop.

    There's quite a few options to work from home, ideally use your existing skills. If you can make tasty gluten-free traybakes then you already have a customer. 😉

    I know the 16 hour rule does have conditions. I don't think the job centre would be happy if I tried to claim benefits with my hourly rate.

    It's not been easy to keep working, but then there has been times where my work has been the only thing keeping me going.

  • Hi Bea, I have been off work since August with severe flare. I too thought surely it can't last this long, but just not getting out the bit at all. I had back surgery 5 years ago for a disc prolapse, chronic pain and fatigue from multiple level arthritis in my spine and lumbar Radiculopathy which shoots pain down my left leg. I have fought my best to stay in work, reducing hours over the years but I agree with everyone's post. I have not been managing my condition at all, fighting my condition instead of pacing my day. i think this is a wake up call, feel my body is telling me enough is enough. I am 45 and worked for 30 years so no where near the retirement age which has just increased to 67! There is no option of working from home either. My GP has said for years she doesn't know how I do it and I suffer for days after working only to start the cycle again. i currently don't have the energy It to fight through the minefield that is our benefits system that has been abused to the point that genuine people are suffering. I hope you feel better soon Bea lots of good advice from your replies X

  • Hi..feel your pain and dilemma about coping with work life and of course the 'scary' benefits system which the abusers of the system have wrecked to the detriment of others who need the support. Agree with you that we should be listening to our bodies more and the inner voice saying ..now why did you do that when you know what the payback will be for the next few days.. case in point ..the strong winds on Monday night ripped the temporary roof off garden shed and so bought some tarpaulin yesterday to tape on until I can get someone to repair properly...my neck is so painful and other muscles but the positive side of me was saying its warm and sunny and I'm stretching so thats good ..😊

    Hope you have better days too!

    Bea

  • It wasn't until I used crutches myself that I noticed how many people with cruches/ sticks who causally walk up curbs and stairs without putting any weight through them.

    I was in a hospital waiting room last week and someone forgot their crutches, whoops! 😏

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