Absolutely fed UP !

Hi folks, today I just feel so rotten - would welcome some words of comfort. Five weeks now on Abatacept injections and the only change is that the side effects have kicked in....the pain in feet is worse if anything. All I've done this morning is go to the shops on scooter, then tackled a heap of forms that needed filling in. Then the exhaustion hit, and I just had to lie down. Surrounded by mounds of stuff that needs doing, no-one else here, and all I can do is lie down. To make it worse, I'd half-committed to a few days away next week, but I just KNOW now I won't manage.....it's a 5 hour train journey, on my own, and I just feel so stupid to even think I could do it. How does ANYBODY with this ****** awful disease ever manage??? I haven't had a break for 2 years, (hospital does NOT count.) I'm in tears as I'm typing this, just fed up being ill, alone and exhausted. NO-ONE understands - I look fine, therefore there's not much wrong with me. Even my GP doesn't 'get it', he more or less says "Why do you need help?!" Plus, I think there's more problems with my thyroid, I was always a bit underactive for years before the RA started, so have taken levothyroxine in various amounts for a long time......had lots of blood tests done a month ago, but could only get a phone appt with usual GP, and I had a list of stuff a mile long to ask about, so I sort-of didn't really think much of it when he said "your thyroid's verging on the low side......umm.....but I think we'll leave your dose as it is" - but I DO feel cold all the time (except when I'm sweating!!), and my hair seems drier than usual, and yes my mood's down but when isn't it??? It's all so vague - then I started fretting about could I have autoimmune thyroid disease and they just haven't noticed? And I feel guilty when I end up crying, because I know that really I could be a LOT worse....Sorry for ranting, but there just doesn't seem like any light at the end of the tunnel at the moment.

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  • Hi Scotslass,

    I can't believe you actually made time to reply to my post when feeling so rotten yourself. What a lovely thing to do, thank you. I also have underactive thyroid but I can honestly say in almost 30yrs nobody has ever investigated the cause. I just assumed it was autoimmune as I think the treatment is the same anyway. If not I'd be interested to know as like you I find the fatigue absolutely soul destroying. It's hard to know if it's down to the ra or the thyroid but whatever it is I wish it would b***** off and give me a break!

    I'd suggest calling your GP back and get another appointment but make sure he understands how low you are feeling. Did he say why he wasn't prepared to try upping your thyroxine a little? I know when mine has been low my hair goes awful and I get very tearful and cold.

    Are you on steroids or been offered a jab to see you over until the Abatacept has chance to work? I found this helped when I started Humira. Perhaps a call to your specialist nurse, if you have one would help?

    Hopefully you're feeling a little better just for venting and sharing your troubles but I can guarantee there are people on here who understand exactly where you are coming from. For me the fatigue is the worst part of the illness. Hopefully once the Abatacept has chance to work you will start to feel more like your old self. Big hugs to you and never feel alone in this. We all understand x

  • Oh bless you for those words, I needed to hear that. The wonderful people on here are such a help. I don't post all that much - no time! Am going to talk to a different gp in the morning and see if she thinks my thyroxine should go up. I just feel such a twit for the wishful thinking about getting away for a break, but I don't think I'm well enough, really. Can sympathize about your feet/shoe problems as I had wide feet even before the ra crippled them, so "pretty" shoes are long gone! But that doesn't bother me at all - daresay it might if I had to dress up for a wedding, but that's not likely either!! Thank you paulywoo xx

  • Sometimes the break can be just a "staycation" at home with little short day trips and fun with friends..

  • I too find the fatigue and sheer exhaustion the hardest part to bear,especially when everyone says how well i look.xxxxxxx

  • Same here! Really fustrating! Thank god for being able to let off steam here! Xxxxx

  • I so hate that, as well Sylvie. My smart ass reply is , sure I am starting a new clothing line, 'Termanali sheek " lol Then again, having experienced Pityriasis Lynchnoids, makes me appreciate the invisible disease. Particularly as hiding it becomes increasingly difficult.

  • Darling ask the train station staff for assistance all the way on your journey. You need this vacation darling so go and enjoy it. Hugs darling.xxxxxx

  • Yes was going to do that Sylvi - but even then I think it'd be a big ask. Thanks for answering.xx

  • Well the train staff will be happy to help you darling i know because my hubby used to work on the railway. I know it will be a big upheaval for you,but i feel you will feel brighter after being away darling.xxxx

  • Yes I still might go - just doing my usual dithering, and always get anxious about going anywhere!! Have booked train assistance before and they're really helpful. Thanks again.

  • The depression can also be directly related to thyroid issues. My sister has Grave's Disease. She did the radiology treatment which killed her thyroid gland and she is on meds for life. It is often difficult to have a relationship with her. Anything can set her off. We have not spoken since December 2015. I sent her the model train I kept in my shop window. It costs at least 1000. To complete. I got up and shipped it to her myself. At the time I could barely walk. She did not even called to say it arrived. When I said thanks for calling she went off the deep end. She does that then stops talking to you and has her children stop talking to you as well. What can you do, I honestly find it so much easier to leave it as is. I have more than enough drama in my own life. I went from two very active bus issues to complete isolation. My heart goes out to you. I still have a family, husband, children. I would hate to face this illness on my own. Although, in reality we are alone unless your partner also has autoimmune disease. My neighbour's household has MS, RD and a very rare form of brain RA all in one family. This is a disease that affects millions so you are not truly alone. I send big big hugs..wish I could send a real one darling.

  • Thank you so much for your kind words. You're not kidding about relationships being hard when living with long term illness - my daughter hasn't spoken to me in 18 months. 'Nuff said. Hope things improve for you too. Big hug for you too. x

  • Actually scottslass - if you think about it, we can ALWAYS feel or be worse. But what you want is the same we all to - to feel better, and that is not much to ask in my humble opinion.

    You might take a look at some things if you haven't - Vitamin D3 for example.. My GP gave me a prescription for D - 50,000 i.u.s and it wasn't until I was in the waiting room with another patient that I found out it is not the general D that makes the difference... It is the D3. I take 30,000 mg a day with a K2 to prevent calcification and that has made a difference to my energy.

    Consider too that there may be some allergies in your diet. Like wheat or dairy. I love dairy and do fine with it. But I am intolerant to wheat and gluten, and actually, I think I am just carb intolerant. Every time I eat a heavy dose of carbs, they make me tired and painful for hours.

    Another thing to try is Aged Garlic Extract. Take a look at the benefits and uses for it at Web MD. For the hundred benefits they list, there is this one: It is also used for fighting stress and fatigue.

    Cayenne is another fatigue fighter, as is Evening Primrose Oil. Maybe some of those would help too?

    Anyway, sending the best thoughts possible to help you get past this point..

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