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Having a relapse...how to talk to people and look after myself

Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
I've been doing really well with the fibromyalgia for the past couple of months, but over the past 2 weeks I've noticed that I'm asleep on the sofa by 7pm, having naps whenever I can, getting irritable and the pain is getting to the point of having to take the top dose of pain meds when I feel really bad. I'm going to the GP on the 27th and I'm starting a pain management course, but those around me haven't really seen the signs and are kind of expecting to me to carry on as normal. I'm really struggling and I don't know what it is that I need to say to other people around me for them to understand that they need to cut me a bit more slack.

The other thing is, that I am still carrying on as normal. I'm pushing myself (and I know often when I'm pushing myself) because I don't want to seem lazy or get fat. Someone who came around to see if they could help me out as a support worker suggested I get a wheelchair just for long trips out, or if I used the shop mobility services in town. I talked to my mum about it and she said she thought that it would just make me not get enough exercise and get really fat. Plus, thats something older people tend to use and I feel like its going to make me feel really crap about using it.

Any ideas?

Comments

  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    Hi Miss_Riot, Happy Christmas! :wave:

    That's great to hear how you have been doing with the Fibromyalgia!

    Maybe once you have seen your doctor on the 27th that you can show the people around you the new pain management that you will get and explain to them how bad it has got. This may help them to understand how bad the pain can get. This will show how tired you can get as well.

    The wheelchair, it may help to get more information about it. Is it possible to ask your support worker next time you meet? There maybe an opportunity to test one out or to look at other alternatives?

    Hope this helps a little :heart:

    You are doing well with coping with it and dealing with the pain, even though it has been a struggle :thumb:

    purple_rain :)
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    They are tenancy related support people not physical health and I can't even get social services to reply to my complaint let alone get anything else from them.

    I'm just seeing my GP tomorrow - meant to be talking to him about changing my anti-depressants rather than my pain meds - he doesn't want to change them right now. But the pain management course from the hospital starts in 2 weeks
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    what do you mean when you say people arent cutting you slack?

    Do you mean socialising?
  • HeatherAnneHeatherAnne Deactivated Posts: 6 Confirmed not a robot
    Hi Miss Riot,

    So sorry to hear that your fibromyalgia is causing you so much pain. It sounds as though you are working hard to cope. It must feel very frustrating especially if people around you aren't able to recognise how hard you are working.

    It sounds promising that you are starting a pain management course in the New Year. Do you think you could speak to your GP when you see him/her today about some exercises or views on the mobility services that could help? Maybe your GP has some ideas which could help you between now and the beginning of that course if reviewing your pain medication isn't something that is possible?

    I hope the visit to the GP goes well today.

    Heather
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    Sorry really bad net connection so haven't been able to reply.

    GP changed my meds - duloxetine and he wants to taper down the pregabalin because he's not sure that they are helping the pain. I'm not too happy about taper them down right now considering I'm still tapering down the venfalaxine. I know it's an expensive drug for the NHS but its given me the best relief verses the side effects of drugs like diazapam or codeine. I did talk to him about using a wheelchair occasionally and he said that the pain management people would be very unlikely to let me do that. But I'm still going to look at a walker or crutches as something better than using my stick.

    Mr riot is really pushing me to do stuff and I know I need to push myself but I seem to find my threshold once I've gone over it, because it doesn't always hurt until I've sat down and relaxed.
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    Had my meds messed around again, the pregabalin has been upped back up again, the venlafaxine has been stopped and the duloxetine has been upped. I'm still looking at starting the pain management course next week but I'm getting quite worried about it - its an entire day each week for 8 weeks, which I think is going to knock me for six.

    I keep talking to my bf and he says it seems like I'm just saying "can't" all the time, but I'm trying to manage my pain and energy levels rather than pushing myself to my extremes. he seems to think that I use my condition as an excuse to get out of things, rather than just getting on and doing stuff. He doesn't seem to understand how I feel and that once I've exhausted myself or in pain I can't just take a pill and be fine or have a little nap and I'll be fine - it can take me days to get myself feeling just a bit better. He just doesn't seem to get it!
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    Would it help if your boyfriend read this? There's a hypermobility one as well, but I can't access the link.

    http://www.fibromyalgiatreatment.com/letter_to_normals.htm
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    can you tell your boyfriend to just stop fucking pushing it??

    if youre not well youre not well, and the last thing you need is pressure to socialise and go out and pushing yourself when you are ill, tired and in pain.
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    Hi Miss_Riot :wave:

    Sorry to hear about your medication being messed about but I hope it will help you with the pain, you are doing well with coping with it *hug* The pain management may knock you for six but hopefully it will help you in the long run. If you like you can keep us posted when you start the course so you have the support :thumb:

    purple_roo has put a good link on the thread, which maybe useful for your boyfriend to look at to help him understand what you are going through and how hard it is for you at times.

    You are doing very well especially with the changes in your meds, you know where we are:)

    purple_rain
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    He's not pushing me to socialise, thats one thing I need to push him to do. Its more getting out and exercising or doing stuff around the house. He does a good bit - all the cooking, kitchen, living room cleaning, but he does try and get me to push my boundaries and keep moving. Its really hard to understand the condition, and I think he gets some of it, but its hard to get your head around the fact that its not like I have a physical thing like CP where I need to keep building my strength, exercise feels like a double edged blade. I'm going to talk to my support group about it tomorrow because i need to and want to lose weight but when I'm in pain and can have really limited mobility at times.

    Purpleroo - he did look at it and it did help a bit.

    Purple_rain - I feel like I'm rattling with all the pills. The thing I'm worried about now is the tummy pains that I've started having :(
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