Hello

b2syo
b2syo Member Posts: 18
edited 14. Apr 2016, 04:34 in Say Hello Archive
Hello,
I am 23 years old. I have only recently been diagnosed with rheumatoid arthritis (about 2 months ago), after six months of debilitating joint pain throughout my body. I have had to give up work since I yo-yo between flare ups and managing the side effects of methotrexate. To be honest, the thing I'm struggling the most emotionally with is other people's reactions. I'm just about coming to terms with the diagnosis myself, I find it hard to support and reassure my family and boyfriend who are obviously worried. I've turned to you beautiful people because (even though I know it's stupid) I feel guilty if I let my family and boyfriend see me be upset.
Thanks for listening.

Comments

  • moderator
    moderator Moderator Posts: 4,086
    edited 30. Nov -1, 00:00
    Hi b2syo

    Welcome to the forums where I'm sure you will get a lot of help and good advice from all the lovely people on here.

    It is a little quiet being the weekend, but I'm sure that someone will be along shortly to help.

    We are here if you need any support to do with using the forums. Many of the mods have some of the many varieties of arthritis and we all know about the feelings that go along with having it.

    You may find the section of the website on "Coping with pain" useful, which also has a booklet you can download:
    https://www.arthritiscare.org.uk/managing-arthritis/coping-with-pain

    All best wishes
    Mod Bryn
  • bitsinabag
    bitsinabag Member Posts: 30
    edited 30. Nov -1, 00:00
    b2syo wrote:
    Hello,
    I am 23 years old. I have only recently been diagnosed with rheumatoid arthritis (about 2 months ago), after six months of debilitating joint pain throughout my body. I have had to give up work since I yo-yo between flare ups and managing the side effects of methotrexate. To be honest, the thing I'm struggling the most emotionally with is other people's reactions. I'm just about coming to terms with the diagnosis myself, I find it hard to support and reassure my family and boyfriend who are obviously worried. I've turned to you beautiful people because (even though I know it's stupid) I feel guilty if I let my family and boyfriend see me be upset.
    Thanks for listening.
    Hi b2syo,
    life can be a bitch sometimes. I`m sorry to hear that you are suffering at the moment. From experience RA can be mastered either by finding the right med for you, or perhaps by other means. Check this out ;-
    Somerset King story Inspire mag
    http://portfolio.cpl.co.uk/inspire/2015 ... real-life/
    Alt link;
    http://goo.gl/794zLe
    Somerset found her own her own way forward with some self help as did I, however the outcome for us both is the same. No guarantees but I genuinely think well worth a go.
    All the best
    bitsinabag
  • b2syo
    b2syo Member Posts: 18
    edited 30. Nov -1, 00:00
    Thanks for the suggestions. I'll check them out. I feel better already after posting on here, it's strangely cathartic. Thank you so much
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    Hello b2syo and welcome from me, too. You are right. It is cathartic to be able to get things of one's chest...or mind.... or wherever they happen to have settled :wink: One of the big pluses of this forum, if not the biggest, is that we can tell it like it is to people who really understand.

    You must have been through a whirlwind of emotions these last few months. I'm sure you were told that methotrexate can take up to 3 months to properly kick in and that side effects tend to reduce in those who persevere. That's true but, if you're still flaring badly, remember you can contact your rheumatology helpline for advice. They will keep tweaking things until there is some definite improvement.

    I do understand the idea of supporting your family and boyfriend. We tend to want to shield them from the worst aspects of our disease. But that might mean you putting yourself under further stress and arthritis loves stress. It's an ongoing problem for all of us. We have to strike a balance between not moaning all the time but also not shutting them out. I'm 55 years im and I still get it wrong :roll: (Do as I say, not as I do :lol: )

    As bitsinabag says some lucky people do find they can identify their triggers amd avoid them. For most of us it's not so simple, alas. Keep taking the meds. Once you'rre stabilised you can discuss with your rheumatologist any experiments you'd like to try. Anything's worth a go but, for most of us, only the meds keep it in check.

    Oh, and keep talking to us. Anytime :D
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us. One thing working in your favour is your rapid diagnosis, the quicker one can start the meds the better the outcome should be but it can take time to find the right drug, or combination of drugs, to be effective for you. This is still early days for the meth, it can take up to three months for it to begin to control the disease but there are other, similar drugs to try. You name it I've probably tried it, currently my psoriatic arthritis (PsA) is now well-controlled by weekly / fortnightly injections and daily tablet sulphasalazine. A friend who has the same condition is controlled by just six sulph tablets per day, lucky boy! I'm nearly twenty years in, he is around fifteen but, unlike me, was rapidly diagnosed. I went for five years without any medication because no-one recognised what was going on.

    Diet is important in that we need to eat as healthily as possible but few people find any kind of reduction in disease activity through diet alone. People have become vegetarian, they've cut out dairy, wheat, gluten etc. but their disease has rumbled on regardless. You will probably find yourself being given all kinds of good 'advice' from those who don't have arthritis and thus have no idea how complicated, draining and tiring a condition it can be.

    Friends and family might like to read 'The Spoon Theory' and 'There's a Gorilla in my House'. Both articles can be found on the net and give concise explanations of the challenges of living with any long-term condition. You need to tell your family how you are feeling and coping (or not) but not on a twice-daily basis. :wink: I let my husband know when things are very rough (as they have been over the weekend) but otherwise I keep quiet, there's nothing worse than an arthritic bore. That's why the forum is here because we do understand, we know how tough it can be, we know there are better times but learning to identify them and not over-do things when they are is a new skill set to be mastered.

    I hope we hear back from you soon. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • bitsinabag
    bitsinabag Member Posts: 30
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:

    Diet is important in that we need to eat as healthily as possible but few people find any kind of reduction in disease activity through diet alone. People have become vegetarian, they've cut out dairy, wheat, gluten etc. but their disease has rumbled on regardless. You will probably find yourself being given all kinds of good 'advice' from those who don't have arthritis and thus have no idea how complicated, draining and tiring a condition it can be.

    Hi,
    it is wrong to say such a thing.
    On this forum alone there are 3 of us that I am aware of that have eliminated or significantly reduced the effect of RA on their lives by managing their own food. There may well be more. While not a large percentage of the members, to dismiss the possibility that relief can be gained because it is beyond the experience of that individual is at best thoughtless.
    Few attempt to systematically identify the correlation between good days and bad days with other inputs. To do so is simple, straightforward, and risk free as it requires no change in medication, diet, or behaviour.
    To attempt to discredit this approach has no merit, even when well intentioned.
    bitsinabag
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    As I said, few find relief through diet alone and you have confirmed it, thank you. You also said that 'Few attempt to identify the systematic correlation between good and bad days with no other inputs. To do so is straightforward, simple and risk-free as it requires no change in medication, diet or behaviour'. And you advocate diet as a method? Well done you.

    I have always acknowledged that I am pleased for you, and that that you have found an answer but find it only fair to say that it may not be so easy for everyone.

    I wish you (and b2yso) well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    Hello again :) How are you feeling about it all now? Better or worse? Dealing with those closest to us can be one of the hardest aspects of arthritis because it inevitably affects them too albeit in different ways. The two articles that DD mentioned can be useful ways in to a difficult topic though. Take care of yourself amd don't be afraid of coming on here to let it all out. We all need that release valve at times.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • b2syo
    b2syo Member Posts: 18
    edited 30. Nov -1, 00:00
    Thank you all for your support it has really helped, especially the articles suggested by DD. It's taken me a little while to come to terms with my diagnosis, but I've come to accept it. Right now I'm online shopping for gadgets to help me around the house, it's going to be like Christmas when they all arrive. A little sad I know, but I'm sick of the bleach bottle defeating me! Child locks and stairs seem to be the natural enemy of the arthritis sufferer.....let the battle commence!
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    I like the 'Bring it on' attitude :D

    Is there anything that deals with bleach bottles? I know we've had this topic before on the forum and most of us just get someone else to open them then not put the top on tightly. Not ideal if you have children in the house, though. Alternatively, after getting someone to open them, they can be decanted into eg a VERY CLEARLY LABELLED old milk or fruit juice carton.

    For normal screw tops I have a brilliant, adjustable, gripper thingy and, for jars, an electric jar opener.

    As for meds' bottles - most pharmacists will put the pills in an easier-to-open bottle if asked. I've kept the ordinary screw top from one and, when I get my new bottle of methotrexate, I only have to open it once as I then replace the childproof (Ha! I used to have to get mine to open them) top with the 'normal' screw one.

    It's an ongoing learning curve but we are a super-inventive lot :lol:
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Friends who visit my house are very used to being asked to open bleach and toilet cleaner bottles (I also cornered the postman once) but what isn't so useful is The Spouse putting the tops back in the proper fashion. :roll: My favourite household gadget is my cordless vacuum, that has really changed my life for the better. For jars I use discs of that plastic anti-slip matting and I am becoming far better acquainted with the dishwasher we inherited when we moved. Have you spotted the tips thread at the top of the LWA board on here? I can never remember its proper name but there are many pages of our ingenious solutions to things that cause others no trouble whatsoever! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben