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I'm new here and I'm not ok

I am newly diagnosed and was given this website by the physiotherapist. My arthritis is comorbid with chronic migraine, which I've had since childhood, and now that the weather is turning bad I'm virtually in constant pain and it's really starting to get me down. I'm trying desperately not to become over-reliant on medication but everything else, hot baths, tiger balm, ibuprophen gel, works for maybe an hour or two before the pain just comes back at full strength. It's affecting my eating and sleeping. I'm not working at the moment but I am registered on a distance learning course and I'm barely able to work on that. I'm supposed to be increasing my exercise but I can barely drag myself to the shops when I need basic supplies. I live alone and completely rely on myself for everything. I'm genuinely hoping that I can get some practical advice here because I'm convinced my surgery think I'm a hypochondriac.

Comments

  • Mike1Mike1 Posts: 882 ✭✭✭✭

    You are not alone! I have OA and am on Morphine and even that just knocks the edge of the pain; sleeping - what's that? Years of no more than 2 or 3 hours a night. Have not been able to work for several years and also have trouble doing stuff. Anyway I think your best course of action at this stage is to press your GP for a referral to a Pain Clinic who will be able to try different meds and other therapies to help you out. Don't hold back and whinge on here as much as you like, it really helps to offload at times and there will normally be someone on here who has been exactly where you are.

  • Chris_RChris_R Posts: 172 mod
    edited 9. Oct 2020, 18:48

    Hi@JenSteele

    Welcome to the Arthritis Community,its great you have found us.You sound really concerned about everything which I don't blame you we have all gone through times of concern and pain and fatique like you are suffering at the moment.You say you have just been diagnosed and your arthritis is comorbid with Chronic migraine. Pain is affecting eating and sleeping,also you have been told to increase your exercise but the fatique stops you from doing any thing.

    We all understand what you are going through and hope by contacting Versus arthritis will help https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-fatigue/

    we have a help line if you wish to talk to and actual person it is 0800 5200 520.

    We also have a few links which may help you to understand what you are going through.https://community.versusarthritis.org/discussion/52348/pain-managementhttps://www.versusarthritis.org/about-arthritis/conditions/arthritis/

    Hope this all helps meanwhile just look at our forums and chat to others just like you who suffer daily with their arthritis everyone has a story .

    All the best and please tell us how you get on

    Christine

    https://www.versusarthritis.org/about-arthritis/managing-symptoms/exercise/exercises-to-manage-pain/








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  • LilymaryLilymary Posts: 539 ✭✭✭
    edited 10. Oct 2020, 00:16

    Hi Jen, pretty much all of us here aren’t ok either, so you’re in good company. Do call the helpline, it sounds like you need contact with a real human being who understands what you’re going through, and it can be a starting point for setting you off on a better path.

    As Mike1says, try to get a referral to a pain clinic. You’re not a hypochondriac, you’re in constant pain, and no one has been able to get to grips with it. If you feel your GP surgery isn’t taking you seriously, the pain clinic will.

    it can be particularly hard going through all this on your own. I lived much of my adult life alone (got round to marrying very late on, relatively recently) so I know that self reliance is both an enormous strength, and a burden. But it makes you very inward focussed, and that can exaggerate the pain. I’m not saying you’re making it up, but if you have nothing or no one to switch your focus away from it, this amplifies the feeling of pain, anxiety and helplessness. Anxiety, stress and depression plus pain is an awful combination, as they feed off each other, and it can be a real downward spiral. It’s great that you’re studying, but doing that from home can be a lonely road as well. Been there done that. I admire anyone who can get through it. I found it really hard.

    i also get the total exhaustion you feel, pain and anxiety, as well as the effects of your drugs, lack of sleep and the condition itself, will do that on their own, never mind all together. Don’t beat yourself up about it. Rest is important too. Try reading about “boom and bust” on this site, it’s important to manage your energy levels, and pushing yourself to exercise for the sake of it probably won’t help. Certainly don’t set your targets by other people’s standards. Start very small, do what you can each day, but accept there will be days when you feel rubbish and allow your body to rest.

    Have a look at the exercises on this site, if only to get your body stretching out to start with, then perhaps a few exercises to build up a little muscle strength, a bit at a time. If it hurts too much or makes you exhausted, stop, find something easier to do, or try again another day. Pushing through the pain or exhaustion is for fit people, not for arthritis warriors. Don’t overreach yourself, there’s no way I could do 10,000 steps or 5k, I can barely get down the road to the shops, despite being a former fell walker and trekker. I’ve been had to give up beginners Pilates, turning up with a stick Is not a good sign! But I can do some of the easier exercise on here and it all helps.

    Try to see this as a new starting point, both in asking for help, and GETTING it, having somewhere to vent (ie here) where everyone gets what you’re going through, and then start to find a way out of this jungley maze you’re in. There are lots of useful tips, eg mindfulness and meditation, absorbing yourself in something you enjoy to take your mind off the pain, treating yourself to just little pleasures as and when you can find them, and general self-care, ie looking after yourself as well as you would a loved one in a similar position.

    try to be honest with friends and family about how you feel too, so that they have the opportunity and understanding so that they might be able to support you better, it can also help. Bottling it up and feeling you have to deal with this on your own can have a very negative effect.

    keep posting on here, read other people’s stories, read some of the brilliant info and advice on this site, and I hope it might give you the little push you need to start you on a new journey to managing your condition to make your life more pleasurable.

  • Jen1Jen1 Posts: 5

    Thank you for the links Chris I have bookmarked all of them and will have a good look. It's all much appreciated.

  • Jen1Jen1 Posts: 5

    I think this is a good idea and appreciate the suggestion, thank you Mike.

  • Jen1Jen1 Posts: 5

    I am very aware of "boom and bust" having been diagnoed with ME/CFS in 2009 and there is a lot of crossover with what I'm going through now. There is a lot of good advice here and I appreciate your comments. 💗

  • LilymaryLilymary Posts: 539 ✭✭✭

    I’m a CFS/ME veteran too. Just when my energy started coming back the OA reared its ugly head. 🙄 Still, some of the lessons learned with the CFS have come in handy now too. I hope you’re feeling well x

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