This is my first time- would be great to hear from fe... - NRAS

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This is my first time- would be great to hear from fellow ra sufferers out there!

Missy profile image
21 Replies

Hello, my name is Anne although this is evidently a popular name and so my tag is Missy. (my dads nickname for me).

I am 40 years old, and have reached this milestone to finally get a diagnosis after several years of joint pains. the drugs are not working yet, except tramadol which has sent me away with the fairies on more than 1 occassion!

Would be great to hear from others, as I do not know any one else with ra and can feel particularly isolated. Plus when things are bad, as they are at the moment can feel really down!

In the meantime take care all of you. Looking forward to hearing from you

Anne/ Missy

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Missy
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sylvi profile image
sylvi

see my answer to your message that you sent me.

sylvia.xx

Hi Tramadol can trigger all sorts of bad responses. such as hallucinations in some people, or in other people like me I have an allergic reaction and cant breathe!!. In the people it does work for without problems it is a succesful powerful painkiller!

Welcome Missy xx ,unfortunately as I / you found out around 40 is a peak Ra diagnosis age!, It is not the best present for you !,

Most Ra medication can take up to 3 months.. my latest which I have had after a few changes takes up to 24 weeks!! ie 6 months and it took a good 5 months it is v slow compared with a lot of the others( 35- 45) statistically common for onset/ diagnosis for RA.

I hope you get succesful medication and it works quickly for you.. with the right drugs things are a lot better xx

Missy profile image
Missy in reply to

Thanks Summer,

it is nice to know I am not alone!

I started on hydrochloroquine in april, and then methrotrexate in august. Am still waiting and hoping to see an improvement. ( Spellings most probably wrong!). Have you found that you needed to change your work etc?

Fortunately for me I am self employed as a cleaner- but have had to cut back to 5hrs a week! Am rather poor at the moment!

I am trying to find a craft that I could do to supplement the above. Being self employed works for me though, as you can work around your own needs.

How are you feeling at the moment? Hope you are in a good place.

Missy

The methotrexate will start to help soon.. my hours went crashing down with my illness.. 37.5 to currently 20! My boss has been holding me at 20 hrs for far too long! and she is insisting on another week at 20hrs then we have agreed 22.5hrs for two weeks then if all is well 25.0. I am in a better place than I have been for a while so Im frustrated about slow increase.

My job can be quite physically and mentally demanding!.. my contract had aleady been permanently reduced to 28.75 and I am trying to get to as near to that figure as my health will allow. I hoping to be well enough to sustain at least 25.0.. and maybe at bit more? x

ohbother69uk profile image
ohbother69uk

hi missy i was diagnosed 2 months ago and have started methotrexate 4 weeks ago 15mg which im having problems with im 42 and similar to yourself had 2 years of pain before a diagnosis was made , im not on here often yet as i feel so utterly awful at the moment but i hope you are getting on alright and hopefully things will improove for all of us , im still trying to get my head around it all and my life back on some sort of trrack ....take care sharon...x

Missy profile image
Missy in reply toohbother69uk

Dear Sharon

It is a shock to begin with, and i found talking to nras helpline, was productive as they advised me to contact the rheumatology team and let them know how bad things were. I did, and my meds were changed, pain killers especially which at the time was a God send, plus a steroid injection to help calm things down.

I have found that communicating with others of tremendous benefit- knowing you are not alone. Words of encouragement from persons further down the ra path. Is there a nras group near to you that you could go along to?

Take care Sharon.

Missy/ Anne

PJ68 profile image
PJ68 in reply toohbother69uk

Hiya - I can understand how you feel - I am waiting for the time when I might be able to have a handful of good days, I get angry and frustrated, but boy this site is fab - a great boost, even if I don't really know anyone - it just helps to know there are others out there!

Take care Pen

BossyB profile image
BossyB

Hi Missy

I too am relatively new and I was put on Hydroxy but felt really nauseus with headaches after 5 weeks so had to come off it. I am about to go on Mtx next week pending my blood test results but hear a lot of bad things about it so not really looking forward to it. I had steroid injection last week which has calmed things down and was given wrist splints also. I am finding it is taking ages to actually sort things out and at times i feel as though I am making it up when I go to see the Rheumy doc. The fatigue is a biggy for me as last week felt better after the steriod injection and had a cleaning frenzy within hours of the injection but although pain has subsided if i overdo it a the weekends I am wiped out. I work full time but I am trying to do my contractual hours of 37.5 as opposed to approx 50 but it is hard. Struggling to adjust to it but have to if I am to have as much normality as poss. Anyway good luck and welcome to the website.

Debbie

Missy profile image
Missy in reply toBossyB

Dear Debbie

You must be wonder woman! I am only able to manage 5 hrs at the moment!!! What i will say amount side effects etc- you tend to only hear about the bad things and not the good. What doesn't work for 1 may be a God send to you, so my advice would be think about how you are feeling - if you want to feel better there is no harm in trying a new drug. If it helps wow- thats a bonus, if not then think again. I have not felt any ill effects of the mtx.

Take care

Anne/ Missy

kezza profile image
kezza

Welcome to this site - I find it so comforting and useful to read and learn more about everything. I don't write in very often but wanted to welcome you and say that this space always makes you feel like you're not alone. I'm 42 and having a flare so taking tramadol and paracetamol which I find is fine for me so I am lucky. I was on MTX for 12 years and it managed my RA very well until a few months ago. Now my MTX has been increased and I'm starting on Sulfasalazine which my body seems to be managing very well. Only downside is my flare shows no signs of going down or away but I just have to be patient. Take care Kerri

Missy profile image
Missy in reply tokezza

Dear Kerri

Thankyou for this. It is nice to know we are not alone, and as I am finding it is only in fellow ra sufferers that you truly find understanding. Saying that i do have a very supportive hubby and lovely daughter, but its not the same.

Everyone has been so kind and helpful- what a great resource this blog is. I wished I had gone on it before!!

Take care

Anne/ Missy

beachbabe profile image
beachbabe

Hi missy i am new to this site too and dont really know how to use it.

have been suffering for 6years with no one to talk to about it really as non sufferers dont really undertstand things like the tiredness !

look forward to speaking again - justoff to a hosp appt now.

x.

Missy profile image
Missy in reply tobeachbabe

Dear beachbabe

Well you are so right, but the great thing is that everyone reading this etc will understand and we can all be support and an understanding ear . Hope the hosp appt went well.

I have one tomorrow- i fell in the bath due to knees and wrists konking out at the same time!

Take care

Anne/ Missy

beachbabe profile image
beachbabe in reply toMissy

Hi again missy,

It is so good to hear from all of the others, isnt it? most of all i think we are stronger than peoplewho dont have ra as we are fighting the disease and ALSO fighting to keep our lives the same! it is so tiring all this fighting ... but we have to laugh as well as we are all very stubborn to not let it control us! !

now we have this forum to talk thru we can all be strong together x x x x

happy days to you all

PJ68 profile image
PJ68 in reply tobeachbabe

am loving this - the friendship show here is just a breath of fresh air

cheers to all new friends!!!

Pen

fizzy profile image
fizzy

Hi, I'm new on here too!

And similarly to Missy, and most of the others, was been diagnosed (last xmas)after a few years of problems. I'm now 35. I have been on MTX for 10 months, 25mg now and its not helping that much, so about to swap to injections as I'm not severe enough for anto TNF. I'm on hydroxychlorine too, and take diclofenac twice a day. Luckily I have a cast iron stomach it seems and have very few side effects! I've had steroid injections (generic ones and one for my knee) which have helped alot in the short term. I've had a few complications of lower imunity as have had flu and pneumonia in the last 18 months! :-(

I'm a working mum of 2, I work 23 hours as a physio in acute care. Its hard going but I am determined to not let my life change too significantly!

I've recently had surgery for my knee as I have had complications with RA in my knee (another story) and have been off work taking things easy for the last 2 weeks, which along with joining this forum, has really helped my RA symptoms!!

Nice to hear all about other people on here, it helps to make you feel less alone with dealing with things, and I hate moaning and groaning to my family and friends about it, especially as they can't really understand what it is like.....xx

Missy profile image
Missy in reply tofizzy

Dear Fizzy

Your last paragraph is so true, i have felt so much happier in myself since joining in this forum for the same reasons as you. It is so easy to feel all alone and try to fumble through but the forum is such a wonderful place for support, advice and letting off steam! Talking of which I just scolded myself filling up my water bottle!

Take care & thanks for replying. Hope you have a flu free year.

Anne/ Missy x

JAC22 profile image
JAC22

Hi Missy,

I too am new to R A -- was diagnosed in Feb. aged 58 yrs. on MTX -- they started to work for me after 9 weeks -- things do get better -- this site is great for getting info. and support -- we understand how you feel .

See you again -- take care

Jane

Missy profile image
Missy in reply toJAC22

Dear Jane

Good glad to heat that mtx has started to work for you. I agree with your comments about the site. Coming on here has been the best thing i have done in reclaiming my life from ra.

Take care

Anne /Missy

A warm welcome to all you new ladies xx.. this site has supported me a lot and I am trying to give a little back.. just talking to each other is the key.. none of us are alone on here.. we share one key common thing.. our illness xx

Alison aka summer xx

ferret profile image
ferret

was dignosed at 16,im 43 now,just found out ive no caralige in my knee,its very painfull but im not old enough to have new knee,yes it can be lonely but try to keep posatve.xx

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