New Here

Fedup

Hi Everyone

I am new to the forum, I have recently been diagnosed with Enteropathic Arthritis secondry to Crohns disease, I have been complaining and suffering with joint pain for the last 18 months and finally 3 weeks ago got the diagnosis, I was already taking Humira for the Crohns and I have just been started on Methotrexate, I dont respond to steroids so im currently suffering with the joint pain waiting for the new meds to start working, right now im feeling really fed up with the whole situation (I am only 34) and am really struggling with the joint pain but also with the extreme fatigue which comes with both Crohns and Arthritis, I work 4 days a week - my choice as this is the most I can manage (following 3 surgeries for the Crohns), I have so many questions and am really struggling with the whole thing right now, so forgive me as I may bombard you guys with all my questions, I have been looking at the different benefits etc that are out there but dont think I will qualify for anything as I am working all be it with difficulty (but at my age im not ready to admit defeat yet!), I have also been looking at the blue badge scheme as walking can be a problem but am afraid that my age will go against me there, I was just wondering if anyone can offer me any advice/guidence on these things and where to go to see if I qualify as I dont want to spend all my time and energy on filling in the million page forms for nothing. Thanks for listening :P

traluvie

Hi Fedup.

A name we can all relate to..
Welcome to the forum..
I am 32 so around your age..do not know about the arther you have but will be sure to look it up once i have posted so i can gain some knowledge..
I think you are doing a great job of working, but be careful not to run yourself into the ground..Our body has a good way of telling us we need to slow down with arther and listening to your body is a good start although i understand this is not always possible..Can you reduce hours at work so you are not so tired?? maybe talk to ocuupational health for advice too..
Regarding form filling ..your age should be no relevance..You can apply for DLA and blue badge without it affecting your money, those are the only ones i can think of while you are working, may be worth contacing your local citizens advice for information they me able to guide you some more and can even help with form filling..
Any questions you do have fire away.. sometimes a problem shared is a problem halved, and we do understand on here..
I hope your meds start working soon so that you can feel benefits..
Have you tried supports or hot/cold compress/deepheat/ibruprofen gel..sometimes it is a case of trial and error till you find the right combination..
Take care..

liesa

Hi Fed Up
sorry your so fed up with it all i can only imagine how u feel as i have never experenced chrohns, my daughters inlaw has been hospitalised for this on many occassions so i know its not a disease taken lightly,
u have nothing to lose by claiming the DLA and Blue Badge, dont know what i would do without my badge its been a Godsend for the last 20 odd years
i think you work to much i dont know how you manage to to be honest or anyone with arthritis alone let alone other illnesses on top of it, i barely have any energy to get out of bed most days...
anyway sorry your here but glad you found AC many will be around and can answer any questions you may have xxx

vonski

Hi and welcome to the forum from me too. Sorry that you have nasty arthur and crohns too. I know of others that have this and I'm sure they will be along to help soon.

Your age shouldn't affect the BB and like Traluvie says citizens advice are good at this or if you have dial anywhere they are good too. I don't blame you not wanting to tackle this horrible form.

Love
Vonski x

woodbon

Hello, I'm glad that you've come to the forum. I'm sure someone will have been through something similar to you and be able to give you good advice, also the number at the top of the page for the Helpline is very good. The people who man the calls have lots of info and I'm sure you will get some good help.

The trouble with the benifits system at the moment is that its in the middle of a big change and so things are quite muddled up and noone is sure what will happen. Working shouldn't stop you with dla, but thats being changed, I expect they will still be able to offer something to people who really need it. The Helpline will be able to point you in the right direction to find out the information. Lots of love Suexxxx

dreamdaisy

Hello Fedup, it's nice to meet you though I am sorry you have had to find us. As the others have said a BB is not age dependant, it's more ability-based. You won't know if you qualify or not for anything until the tiresome form-filling has been done, a bummer I know. :sad: Despite working you could consider applying for Disabled LIving Allowance, I work (less than I used to) but receive it. They are clamping down on new claimiants but again, you won't know until you try. I have to go and start sorting dinner now, I am so NOT in the mood! Oh and bombard away, we will do our best to help. I wish you well. DD

pinkbritishstars

Welcome fedup :-) nice to 'meet' you

suzygirl

Hi fedup, I am sure that both of your conditions would qualify you for a BB. Your gp will be able to help you.

CAB would be able to advise you on benefits and help with form filing, its a minefield.

Feel free to ask any more questions that you may have. People here are happy to help and know what it is like to live with a chronic illness.

dreamdaisy

Hello Fedup, how are you feeling today? I hope you are at least a little better/brighter. DD

julie47

Hi Fedup

welcome to the forum, sorry that you are feeling so fedup at the moment

hope you feel much better today.
Juliepf x

skezier

hi Fedup.

welcome from me as well and its a good place here.

i got the crohn's as well and they all evil! i hope the mtx will help a bit, it just about holds my crohn's down though as you know it will break through anything if it flares.

i so agree with you about the tiredness. got to say for me the crohn's fatigue s terrible, far more difficult to ignore than the pa and other thing fatigue but when they are all active i just become a total zombie.

its not easy to keep working but i know sometimes, cus of the money, we need to and its not so easy is it?

i don't have a bb but think i should get one as well... thee are times when walking any distance is daunting and well good luck if you go for it.

i guess you know about the NACC site as well? they have a lot of useful info there and both there and here have very good helpline. either might be able to help you.

hang in there and its nice to meet you. Cris x

Fedup

Hi everyone

Thank you for the warm welcome, it makes a difference just to know its normal to feel like this!.

Not really feeling any better today - just so exhausted I cant seem to find the energy to get off the sofa good thing im on holiday this week, hoping it will improve before I go back to work on Monday.

I see my Gastro on Friday so may have a moan at him about how im feeling about things ill see. Cris - yes i am already a member of the NACC and consider myself to be fairly clued up on the Crohns side of things - 3 bowel resections in 4 years and numerous allergies to medication I have had to be! Just hoping I dont have the same problems with the arthritis drugs.

Is the fatigue im feeling right now very common in Arthritis?.

I have also submitted the form for a BB but dont hold out much hope, does anyone know if it gets rejected can I reapply? - as maybe should do that when im thinking a little straighter. As for DLA ill tackle that another day as im pretty sure I wont qualify for that as I dont need help with anything as is indicated on their form I just struggle to do anything but thats fatigue more than disability.

Hope your all feeling well at the mo, and thank you again. xx

dreamdaisy

Fatigue is definitely part and parcel of arthritis, be it OA or an immune-system based one. I never thought I would be needing afternoon rests at the grand old age of 42, but sure enough they helped me get through the day - ten years on they still do (and they now include a mid-morning sit and an early-evening wallow too. :oops: ) DD

lalla

Welcome to the forum, you sound as though you have been through the mill already, but hope MTX kicks in soon to help you, let us know how you are doing Take care <Linda

bubbadog

Hi Fedup, Welcome to the forum! I'm 38 and suffer with Osteoporisis and bowel trouble that is still being investigated! (due in hospital Monday for op) So I can feel your pain and know alittle of what your going through! My Uncle has Crohns diseases so I know what an evil disease that is. So I really feel for you and hope you have a better day soon. You can ask as many questions as you want to and we all will try and answer them for you. If you ever just want to rant at someone or just to someone who understands what you are going through you are welcome to PM (private message) me as much as you want. Take care bubbadog/Amanda.