Making myself worse with fear

Ok is it just me ? I feel like I'm going crazy and since having ra I now have everything if I have a pain it is ra if I have a headache it's ra , I had a chest infection I now think I'm going to get pulmonary fibrosis I just can't enjoy my life I hate this thing me and my partner are on the verge of a break up I'm losing friends I just need help

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  • No it's not just you Oxo! And it is so easy to live in fear of the tiniest things - I got a blister the other week on my heel and by the end of the day my head had convinced me it was going to get infected, go septic, gangrenous and I'd loose my foot - a sharp mental slap on the back of my leg finally snapped me out of that flight of dark fantasy!!!

    Do you get any support beyond your family unit and friends? If not it might be worth seeking support. Would your partner be up to speaking about their feelings re your condition as there is a grieving process that you will be both experiencing - in someways when my partner shattered an ankle ten years ago I found mentally adjusting to our new situation harder than adjusting to my RA - no more long walks, no cycling tours etc (we still can't do long walks but thankfully cycling after six years came well and truly back on the cards) and because I was not the injured/unwell one I felt confused by my sense of loss/helplessness and just kept it close to me but getting frustrated and sometimes angry at our situation - I can say all this in hindsight but at the time didn't have a clue as to what was happening and we came so close to splitting up, the house was up for sale the lot and then I had a serious bout of depression and that ironically opened the door for me to see someone to talk to ... Don't walk that road if you can help it and go the 'speaking' route before crisis hits if you can.

    All the best

    Ali

  • I agree that its good to go for help. I have moments of complete despair and a friend who had suffered from chronic depression for years told me that she gets through the worst days by having little signposts throughout the day. Just small things with hopefully something nice to look forward to. Another thing I did/do is to write down positive thing that happen. I find that distraction helps a lot and the best friends I have are ones who dont want to talk to me about how I feel but who come with things outside my restricted life.

  • I agree - having RA plays havoc with the mind as well as the body. I hope you can get help via your GP and counselling rather than splitting up with your partner and losing friends. Tx

  • Hello, You may be able to attend group meetings for support for persons with chronic conditions, some are offered at local libraries and your Rheumy may also know of some, your GP may also have information on group counseling offered in your area.

    I was feeling very isolated and alone, no one truly understood my pain. Going to group gave me the support needed and that way I also didn't bombard my partner with complaints, he did not understand. I had another outlet to express my pain and anxieties. Having heard others stories and having people going through similar issues can put your mind at ease. This site also for me was a like a miracle, it is very different form what is offered in my country and I find this a more mature and responsible site.

    Sometimes talking to strangers about our condition is easier than the ones closest to us.

  • I am so sorry you feel like this.

    I have never been scared of this disease. And I think that's because my 'pattern' was that at first it hit me so hard I literally did not have the energy to worry. Then it started improving so optimism took over from the daze I'd been in. I appreciate that others have different patterns that cause more anxiety.

    But it is very possible to live a happy life with this disease. You can see that clearly from some posts and from reading between the lines with others. And then there must be thousands of RD sufferers who have been through the mill & come out the other side so they don't feel the need to belong to an online forum.

    Focus on working with your rheumy to get the disease under control. If the meds aren't working, push for more effective treatment.

    I believe it's important to emphasise that this can be a serious and disabling disease because that is the reality. And we need to stay real and to fight it. However, the outlook is really very positive for many of us. It's predominantly a chronic disease - something to live with, not something that's likely to finish us off by a long chalk. There are many worse things in my book and I thank my lucky stars I haven't got something more sinister. Tell yourself you are not going to come a cropper, you've got loads to look forward to. You'll adapt, you may well get loads better, it could be worse. We're here for you.

  • I'm with you. The other day I was telling my husband that something could be the RA or worse because of the RA, and his response, quite rightly so, was that I think EVERYTHING is because of my RA or the drugs I take to control my RA.

    Over the past two years I have been reading about meditation, mindfulness and really being in the present. So, today I have RA, but I have no symptoms (except nodules on my finger pads) and I am pain free - so fantastic! It doesn't help me TODAY to think about where I might be 1, 5, 10, 30 years from now. I just found out my real estate agent's mother has pulmonary fibrosis. I could totally get that. People with RA are at higher risk for that. But does it help to imagine my 5 year old son one day being my 50 year old real estate agent dealing with his sick mom? I think it's good to know the risks, and it's good to understand what is out there. It can be helpful to know what you're susceptible to so that you're able to recognize and tackle issues at early stages, before they get out of control.

    But you can't live in fear.

    And it's no good feeling sorry for yourself.

    I'm not saying you can't fight back or grieve, but look at all the people on this forum who are dealing with a LOT and I think they would argue they still have a lot to give to this world. Your disease does not have to define who you are, but it certainly tests and strengthens you in more ways than you can imagine.

    And it kind of sucks that your spouse is all able-bodied and able to just get out of bed in the morning and do stuff without being in head-to-toe pain or woefully exhausted. I think the best you can do is to communicate exactly how you feel, share your fears, and make him understand what you're dealing with. Sometimes telling my husband that I am scared my laryngitis is permanent or that I'm afraid I'll never the unwelcome 15 lbs (that I gained on Plaquenil, the "this may cause weight loss" drug) is as much for me to hear his reassurance that he still loves me the same, or to have him tell me I'm crazy (because even though he's not a doctor, I would love for him to be right).

    And counselling is good too. I spoke to a psychologist weekly for about 3 months and found it really helpful.

  • Also, and this is a long shot as obviously I don't know you or your partner but anyway. If your partner's a bloke, I think men need something to get their teeth into. Maybe partners of people with chronic diseases just need something practical they can do regardless of whether they are men or women.

    Perhaps it might just help to ask your partner to find out more about the disease so they can talk it through with you. Some cautious googling for example (avoiding the scare-mongering). Can he or she accompany you to appointments with the task of helping you recall what was said?

    My husband is more aware than I am of my limitations in some ways. He takes pride in planning holidays or occasions or even a day's gardening that will enable me to enjoy myself and make a contribution. I think he feels involved because he is.

    If my husband had this thing to contend with I'd feel helpless unless I had a key role to play in helping him. But I think when partners see you developing coping strategies they tend to be impressed too.

  • I agree with everyone of you I worry about everything even before the ra and suffered a m7kd dose of anxiety last year after the sudden death of my mum I'm my own worse enemy as I read up on things and self diagnose myself at this moment in time I actully have no or very little pain but have convinced myself that because of that I will get even other thing going ahhh why can't I just get on and enjoy my life I have 3 beautiful children 2 grown and a 6 yr old who I feel suffers because of my mindset thank you for all of your comments I will be in contact with my gp

  • It seems likely that the grief you've been experiencing following the death of your mum is very understandably going to colour your experience of RA. From the way you express yourself I bet you'll move on, when you are ready to. Take your time.

  • Postle2 and Karen77 - thank you for the nice posts. Very encouraging words and great advice.

    Oxopinkyblue - I am also a worrier. Has gotten worse since my diagnosis. I too am in good physical shape at the present time, but have constant 'what if' thoughts. I have joined a stress management group and am working hard to get my life in order. Praying that my efforts will pay off and my mind will be clearer.

    Wishing all the best to everyone :)

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