Good morning you lovely people I hope you are as well as possible today. Sorry to do this but I need to rant for a bit. So, my joints are getting increasingly painful and swollen with more joints joining the party. I've been on MTX for nearly 7 months and it's not enough. Sulphasalazine was added in and it didn't suit me at all. Stopped sulpha and added hydroxy. It didn't suit either. I felt really quite poorly. The fatigue is becoming a big problem too. When I saw the consultant last month she said that she would do an ultrasound of my hands and feet and if that showed inflammation we would be looking at biologicals . She also told me that there was "something else". I didn't ask what. I'll worry about that if/when I need to.
In the meantime, the app supporting my email just disappeared literally overnight. You may as well cut off a limb. I was distraught but hope it's working now.
Because of the fatigue I can't walk very far and so have had to resort to a wheelchair on occasion. Can someone please tell me why so many pedestrians simply walk into you when in in a chair? Himself won't let me put blades on the chariot of wrath, as I like to call it. Grrrrr.
To top it all off I called into our local library which is now run by a charity and has become a hub for village life. Some selfish person had taken a child suffering from very obvious chicken pox. Now, I'm not the only person around here whose immune system is compromised or suppressed. Two of my friends also have health issues leaving them vulnerable to infection. What is wrong with people?
Sorry for the length of this. I needed to vent before I said or did something unforgivable.
Hugs
Jan
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Gnarli
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Really sorry to hear you're feeling so poorly. I hope once you have your scan that they are able to find a treatment that works for you- sounds like biologics is the way forward maybe.
As for people - some are just plain rude- I've no other explanation ! I'd get the blades on!!!!
Rest up, be kind to yourself , vent all you like and feel better soon .
No wonder! Sometimes, when we hit that hard place, everything can desert us and it's a case of gritting teeth and tears until something changes. Can be a lonely place.
Sorry the dmards didn't work for you and that you have been forced to suffer such a long time. The biologics can make a big difference, hope you'll get some real help soon. The cryptic statement from the consultant " then there is something else..." certainly didn't decrease your stress😕Not very helpful. All the best. Simba
Thank you. One good thing is I haven't the energy to fret.
J
What on earth have you done to your dog?
Worsening fatigue, swelling, pain ... that is not a recipe for happiness. So sorry you're going through this Gnarli. However if biologics are on the cards that could be excellent news in my opinion.
I used a scooter for a short time (before PsA so not related) and found it made me extremely anti-social and foul-mouthed but only in busy streets. Can't imagine why that was. I also devastated someone's topiary cockerel when I lost control.
With a bit of luck your immune system will be holding up enough to resist the chicken pox. Key thing is, there could be better days ahead, there really could. It's tough though, really tough. Wishing you all the best, hang on in there.
Sorry to hear you having such a rough time. As everyone seems to be saying, biologics would appear to be the way forward for you. Do you have an appointment for your ultrasound? If it were me I would want to know what the 'something else' was. Hope you are able to rest and feel better soon. xo
Hello Jan, sorry to hear you've been struggling. Moving onto the biologicals was a huge turning point in getting my disease under control and I hope - if it comes to it - that the same happens for you. In the mean time, look after yourself; rest plenty, stretch when you can, ice and heat as you prefer and plenty of painkillers.
I've been temporarily using a wheelchair and I, too, have become invisible as a result. It's quite fascinating really. I think everyone should be made to use a wheelchair for a day and then they might understand. I'm not sure if you self propel or not. I can't and unfortunately, my "driver" is a bit haphazard and sometimes knocks into things or even people. 😉
The chicken pox thing annoys me so much. People just don't think, do they? Got all my fingers and toes crossed that you weren't close enough for it for be an issue. I've been in close proximity to chicken poxy people quite a few times and been fine.
Thank you. I am frankly baffled by other's behaviour. Mobile zombies are my least favourite. I'm used to being invisible being of a certain age but really! It's called the chariot of wrath 'cos himself and I always end up having words.
I'd ask your Rheumy to sort out your DAS, & get on with applying for funding for Biologics. Of course they aren't perfect but you really do need some sort of fast track to ease your situation. I'm on RTX & it seems to suit me well - apart from the mind numbing fatigue, but I'll take that over pain any day....I'm hoping it will lessen as I get more used to it.
Do you also experience the " does she take sugar" syndrome when you are in your wheelchair? I found not only do people walk into you, but they think you are deaf & dumb because you aren't walking! I developed some real 'smart Alec' replies which were not always appreciated. But who cares?
Fingers crossed you find a regime to help you very soon.
Thank you. I suppose "does she take sugar" is marginally better than "how are her periods". Had a couple of unfortunate incidents with lower cut tops than usual. Made me laugh though.
Oh Jan, I'm so sorry you're in a bad way at the moment. You've added so many thoughtful, light, encouraging, and often humorous replies to others posts that always left me feeling just a little bit better and I wasn't even the one who wrote the post!
I do hope if your consultant supports putting you on a Biologic that you are approved trop vite!...and more importantly that it works for you. It was a game changer for me.
Thank you. I just feel quite lucky that this didn't happen 20 years ago when my three were at home and I was working. The sense of humour is taking a battering though.
Rant away, that's what we're here for! Sorry to hear things aren't great for you at the moment. Fingers crossed that you get the go ahead to try biologics. Chicken pox are at their most contagious before the spots even appear, so hopefully that child will be past the contagious stage (fingers crossed!). What a worry for you though. Take care. Mhairi. x
Bless your sweet heart. I'm honestly not that worried as I didn't get that close and I am aware that the little loves can pass it on before you know they have it. I am, however, absolutely raging that I know two of my friends who were there have serious health issues not forgetting others who may be more vulnerable than the average. All put at risk by a thoughtless idiot. Grrrrr
Hi Gnarli, although we've never met, as we respond to one another's posts, I think of you as a friend so thats pants that you're feeling so bad! Although my pain is "manageable" (i.e. I don't want to increase Mtx any more than I have to) I'm fatigued and totally with you on the mood front - so many people annoy me! I also seem to have completely lost my sense of humour e.g. finding my (adult) son had cleaned the bathroom with windowlene? Somewhere deep inside there was a me who knew it was funny but instead I'm seething with hopeless fury! My problem is I've been really well for a few months and now don't feel great again. It hopefully will pass, but I've had this pattern for 11 years and seemingly with the memory of a goldfish, I still find the move from wellness to illness hard to handle. My point in all this rambling is that this disease demands not only that we deal with the physical symptoms but the emotional demands of constant unpredictability and uncertainty. It it any wonder we're crabby at times?! Wishing you all the very best and hoping you're soon on the way to a better phase x
Thank you Entero and you weren't rambling. It was a beautifully expressed summing up of 'how it is'. I'll admit to having a little cry and a big giggle. Windowlene! Good grief. Did I mention being very teary too? All the emotions just under the surface ready to burst out and embarrass the behind off you. Having been fiercely independent this having to accept, and having to be smilingly grateful for help, is killing me.
I'm really sorry you're feeling poorly too. This rotten disease steals so much from us. Huge virtual hugs
Morning Jan. Horrid to hear your feeling poorly. I hope once scans are completed that they are able to put you on right treatment. Saying that they should also be aware that the pain we feel does not always reflect in X-rays and scans .
Some people who chat whilst walking don't seem to notice a wheelchair or pram until too late.
What a good set of teeth you've got there, and an expression that reflects your mood. You seem to be going through a low patch and I hope you'll come out of it soon. Fatigue is such a bummer. You can have the best intentions and then it takes away all your energy. It wasn't until I accepted that I have to put up with it for a while and therefore wasn't spending a lot of energy fighting it and stressing about it, that I gradually got on top of it. Listening to my body telling me "REST NOW", even just for a few minutes. Doesn't your Rheumy do DAS? Surely by now you would qualify easily for a biologic. Get an answer to the "something else" asap, otherwise it might niggle in the background and cause you stress. As for peoples attitudes, often they are just scared of saying or doing the wrong thing, but more likely it's just pure ignorance and selfishness. I hope you'll give us some good news sooner rather than later. Be patient with yourself (and maybe Himself) and keep in touch. All the best.
Thank you for taking the time to respond. I was feeling a bit overwhelmed but I reckon I'll do my usual and haul myself up by my bootstraps. Time to starch the upper lip and rewire the lower, get the bossy pants on and maybe be kinder.
Feel for you my darling .I often feel life with constant pain is not worth going on ,like you I am not depressed,but some time I want my legs ,arms hands cut of ,my. Rheumatoid doctor is excellent.but you have to wait months for scans etc had a blood test a few weeks ago and it said my infermation was only slightly raised,Well why am I in so much bloody pain ? Thinking of you x
Thank you for your lovely, kind and thoughtful response. No, not depressed but frustrated and angry at this body of mine which lets me down so often. And then you go and send your comforting message and the world looks better. Thank all that is good for this forum. We know how it is and can support each other. I hope your inflammation levels drop and that your pain disappears. Huge hugs
I can only imagine how hard it must feel but it is not your body that is letting you down, it is actually fighting for you to survive, but you have all the reason to be frustrated with the effect of the meds and the treatment offered. Take care and rant as much as you need. xx Simba
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Hi Everyone, i'm new here.
first rheumatolist appointment yesterday
Left confused by my visit to the rheumatologist.
Has anyone else been told that they're "not sick enough"?
New and confused!
