Firstly, I must say that it is a wonderful feeling to know that am I not alone with my suffering aches, pains and general mutterings. It is such a relief to find peeps like me! I have wondered for a good while if anyone would actually understand how I felt and all I had to do was to do a little searching!
Well, my story! I have now been diagnosed with RA for nearly 2 years. At first I couldn't believe what was happening to me, huge fat sausage fingers, no ankles, immense pain and only 2 hours of sleep per night. I suffered in this hell for 9 weeks, until I begged (nearly on one knee) for my GP to refer me to a person that might be able to help. I did even mention the words 'private patient', hopefully to nudge him into getting pen to paper rather quickly. And as my parents were extremely worried (does it really matter that I am 38 years old and have concerned parents??), that they did offer to pay privately to get this sorted out as quickly as possible.
That glorious day finally came and I went to see a Rheumatology consultant and after a quick examination, I finally had an answer to my own personal hell, and I was diagnosed! A fantastic steriod injection in my rear regions and a prescription of numerous tablets clutched in my hands and I was sent on my merry way. And lo and behold, 48 hours later I was finally getting my much needed 8 hours sleep a night! Phew!
Two years down the line, I am now on the Methotrexate injection, which is going ok, although the idea of sticking a needle in ones leg still sends a cold shiver down my spine! And I also now have the pleasure of the Humira injection every two weeks, yippee! No doubt before long I will be leaking from all the puncture wounds! I have yet to have a pain free day, is this normal?? And my moods are more down than up, in other words I have turned into this grumpy old woman (yes, my Mother!!!).
I find it really difficult to try to explain to folks about my pain, they don't understand. I usually get 'Well if its that bad you shouldn't be at work and they should give you some money'. I've tried and failed miserably, but is it the answer?? I think not. For my own sanity, I need to go to my part time job every day, if I was sat at home staring at the same four walls, then they would certainly come crashing down around me. I would no doubt, with my grumpiness, be shipped off in my straight jacket into a padded room! Does anyone understand?
And just to top it all off, I have now contracted Shingles, just 6 days before I go away on holiday, happy days - not!
Thank you all for reading my story, it is really so good to read about normal people like me, thanks!
Written by
mamabond
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Hi mamabond, welcome to the site that shares the pain and cares! You sound like pretty much all of us in the RA world. It is good to talk to others who understand the pain, because in general people dont understand RA, they know rheumatism, and they know arthritis, but the undefined joint hell of RA isnt one that is understood. The screaming pain that goes with it is hard to describe to anyone other than a sufferer.
I am over a year since diagnosis, gone from unable to feed myself and wash myself to a pretty normal life. However, I have had to give up full time work and am now part time, and I cant say I have a lot of pain in comparison to what it was like, but I do feel that as long as I pace myself the pain is minimal. I do take painkillers every day as a routine, trying to stop them resulted in a lot of pain and I am not prepared to limit activities for sake of limiting painkillers.
I also think it is really difficult to think about how life has changed at times. I could do much more that I can now and I do grieve for that life at times and my mood dips. I find it harder to look after my grandkids, I get so tired now, I miss having them all day and still having energy.
However, I am better than I was and that is the most important thing. You have to try and keep really up - beat otherwise it can get you down totally.
We all do empathise and sympathise with each other and this is a great place to ask questions and get good advice as well as having an off load sometimes. We all have bad days/weeks and this is where you can get support from those in the same position.
Take care mama, look forward to hearing from you over the weeks.. hope the shingles doesnt ruin your holiday? are you going away?
Welcome. I can only reiterate what Petra has said. We all know exactly what it's like and how you feel. I've had RA for nearly 40 years but only discovered this site a couple of weeks ago and what a blessing it has been! We all have our bad days so feel free to rant.
I was diagnosed about 2 years ago - feel free to read my blogs - much the same as you, but I have turned a corner. I still have pain, but how I manage it depends on my mood!
I do hope you feel better soon, and look forward to hearing from you again
Reading your reply is like reading my life! I am so thankful for the somewhat limited ability that I have now, and certainly do not wish to go back to how I was! But like you said I do mourn my 'previous' life and it is very frustrating of how little I can now do and especially with a 9 year old daughter, it also effects her in ways. But thanks for your reply, I feel like a weight has been lifted from my shoulders! Oh and yes, off to Devon for a week, and to be honest, at least I'll have a change of scenery, even with the Shingles!
Thank you for making me feel so welcome. I can't believe I found this site, its wonderful to actually have folk understand what you're going through. My gosh I might be ranting everyday now!!
Hi Cass, welcome to the site, I hope you find it as welcoming and informative as I have. Your story sounds very familiar, I remember enjoying my first full nights sleep after the wonderful steroid jab to the bum too. I've only been diagnosed since May so still have a lot to learn. I hope you have a lovely holiday and hope to see some piccies on your return. Best of luck with your pesky shingles.
Hi Paula, Thanks for welcoming me. Ah bless I can still remember my first month or two, not very pleasant, but its still a long road ahead. I should say that it does get better, but at least you can sleep! The positive mind is what really counts, and the old saying that we just have to crack on, comes to mind. I am having a bit of a flare up at the mo, must be the shingles and that I have had to refrain from taking my Humira, but hey ho, holiday soon! Hopefully the weather will stay nice, a bit of sun might just do the trick!
Hi Cass, nice to meet you - hope you have a good holiday.
Had shingles about 3 summers ago. Pure hell !
Mine was around the right waist and hip so ended up cutting up a couple of old 'T' shirts and a pair of knickers and walking around the house in a dressing gown when it was at it's worst.
Once I found out that the calamine lotion everyone was suggesting helped (but only if I held a big wadge of cotton wool soaked in it over the blisters for a while which dried them up) it was plain sailing.
Did you manage to get the injection to help it? Unfortunately I didn't realise what it was so had to go it just with the calamine lotion as it was too late for the injection.
Nice to meet you too. What injection??? My doctor is not very forthcoming with helpful hints and suggestions! He gave me some huge horse tablets and I have been bathing in calamine lotion, but really didn't realise how painful it is! For me I have it on my back and front...just on my bra line, so wearing my bra is painful and without it is also painful, and not very flattering to say the least!
Will have to try soaking cotton wool and keeping it on! Thanks for that tip!
Hi Cass, GP told me that I should have seen him earlier then I could have had an injection which makes it less severe. I didn't get it 'cause I didnt realise what it was. Maybe your tablets do something similar. I didn't even get any tablets. (Mind you, I'm on so many drugs maybe the tablets would clash).
It really is painful and so depressing. I do so feel for you. The only people who understand just how painful it is are those that have actually had it themselves. From what I understand the blisters form at nerve endings which is why it is so painful, but it does get easier. I well googled it when I had it in the hope of finding something to relieve the pain but didn't find anything.
I wonder if its worth trying something cold on them for a couple of seconds (frozen peas etc. wrapped in a cloth). I didnt think of trying it when I had it unfortunately, even found it hard to keep my mind with it enough to hold a conversation. (As you can tell, I use 4 words when 1 will do so it was very unusual for me !!!)
Cass welcome,you have found the best site on the web. They are a great bunch of people,i won't say ladies as i don't want to upset pete!! They are always there when your down and in pain. Don't worry if you are down or want a rant we all do at times.
Thank you very much! Everyone has been so kind and lovely, it makes a lovely change! And I'm sure I'll be doing plenty of ranting in the not too distant future!
Cass
Hi Cass - coming late to this but just wanted to extend a warm welcome to you along with everyone else! Tilda xx
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