New to all of this...and worried!

MrsSparrow

Hello everyone,

I posted on the say hello forum, and I was advised to post here as more people read this forum and may give me some wise advice!

I'm 44 years old and after months of back problems was finally referred to have an x ray and assessment by the local musculo skeletal team and have been advised i have arthritis and a curvature on my lower spine. I've been told I need a MRI scan to determine the nature of the arthritis and type of treatment needed.

It has come as a huge shock to me (the docs kept insisting it was a trapped nerve) and I am very apprehensive about what is going to happen.

I have 2 young children with autism and I am their primary carer and my main worry is how can I cope with it all (my daughter was only confirmed a month ago :sad: ) and it all seems to be piling on at once.

I'm hoping someone out there can offer some words of advice (I've tried not panicking and it doesn't work!)

Thanks for reading

Kate

lincolnshirelass

Hi Kate

so sorry to hear about your back but once you get the type of arthritis diagnosed you should be started on the right meds for it & hopefully you'll see an improvement.
I found the worst thing was not knowing what was wrong, then panicking when I was diagnosed with OA & RA but once treatment started I could see light at the end of the tunnel.

I'm glad you've found your way to the forum as you won't feel so alone - you'll get lots of support - make sure you get all the leaflets you can find about your condition, you need to make life as easy as possible for yourself.

I don't know whether you've contacted support groups to help & advise with the children but if you haven't please do as soon as you can. You'll come across lots of mums with similar concerns & you'll be able to support each other.

Best wishes

stickywicket

Mm it certainly must have come as a big shock, Kate, especially on top of all the other stuff.

Try to bear in mind it doesn't necessarily mean you're going to get very bad very quickly. Once you get the scan done they'll hopefully get you on some meds that'll both make you feel better and slow things down.

Are you in touch with any autism group which might be able to give you some support on that front?

I know that saying 'try not to worry' doesn't stop you worrying but I've always tried to limit my worries to immediate stuff. 'What ifs' about long term futures are just so imponderable for anyone, let alone people with arthritis. Do you have people at hand who you could talk to? We are always here, ready and willing but a good close friend is better.

MrsSparrow

Thank you both for your kind words. I am in contact with both local and national support groups for my children (my son was DX'ed 4 years ago), and today I contacted contact a family to see if I could find any support for my situation. They suggested I contact a disabled parent support website which I have done, and hopefully this will be a starting point for my specific issues.

I hope I can come here to discuss my specific problems, as I was told my type of arthritis was very unusual for someone of my age (maybe not I'm just taking their word as a novice!), and I'm not well versed in the specifics of what they are telling me :???: .

You guys have a wealth of experience I don't have and I'm hoping to learn and eventually pass on your wise words.

Thank you again

Kate

tjt6768

Hi Kate, quick welcome as my hands are hurting, but I've had osteo arthritis in my lower spine for many years now, I've just turned 43, reluctantly, lol...

We are quite a knowledge bunch of arthurites, I'm sure that you'll be glad you joined.

Be well, hope you are not suffering too much this evening.

valval

hi no matter which type of arther you have once you start meds you will feel so much better than you do now untreated arther is awfull so hang in there we are here for you even if it just to let off steam to some one who understands does help a lot val

stickywicket

Kate, you sound so on the ball I'm sure you'll cope well with whatever life throws at you.

I'm not sure about the 'wise words' bit but we're always here with words of encouragement. And for wiser words there's always the helpline.

Take care.

ironic

Hello Kate,
Welcome to the forum although I am sorry to hear that you are struggling with the back pain.
It is a big shock when we get such an unexpected diagnosis. I hope you have been given some medication to see you through until you have had the MRI.
Of course you are upset and frighten but try and not get too far ahead of yourself with the future and it may be an idea not to do too much research on the web until you know for sure what the results are. Not easy I know but there are some scary and misinformed websites out there.
If you contact the helpline team they will be able to talk things through with you and point you towards the right leaflets if you want them.
You are not on your own and there are many lovely people on here that will have more experience than I have.
Welcome again Kate and I hope to see you posting around the forum soon.
Lv, I x

frogmorton

Hi there Kate

You must be scared! I would be too.

They are likley right about the trapped nerve...it is likely being trapped by the other problems :sad:

What l will say is l am here and upright having had back surgery 8 years ago so don't panic!!! All will be well.

At the time l was single parent to two girls 5 and 8. It wasn't the best time of my life, but am glad l had it done now.

On this forum there are at least two Mums with kids with Autistic spectrum disorders so you WILL get some sensible advice support and sympathy and at least another two whose kids have learning disabilities as well.

You don't need to feel alone here.

Love and hugs and HUGE welocme

Toni xx

DebraKelly

Welcome.

I can sympathise with you, I was diagnosed with RA on 2009.
It does a while to get used to the idea of having a permanent disability.

I too had an MRI Scan - firstly, MRI's are nothing to worry about, you just have to lie still for a period of time, but there is no pain is discomfort at all during this.

Once you start on your treatment, it will take a while to work, but once it does you will feel the benefits.

Also, don't panic if your treatment doesn't work at first, they may need to increase your dose, again don't panic, this is perfectly normal as I had to go through the same thing.

Keep us posted.

((((Hugs)))

MrsSparrow

Thank you all again, I'm feeling a lot more positive today - despite the pain being intense today (it feels like i'm being squeezed by a tight corset from the base of my spine to the the middle of my chest and my hip is completely numb with shooting pains and tingling down my leg). I've been put on paracetemol and codine with diclofenic suppositries (yes I'm finding that a real challenge every night!) as well as indigestion tablets to minimise my stomach issues.

My information from the helpline came today and I found the feelings booklet incredibly helpful even though I seem to be experiencing all the emotions at once!

I'm trying to take it one day at a time and not be so hard on myself for not being able to care for my children how I feel I should and hopefully as the weeks go on I can work out how to care for them and myself.

I've got my local carers rep coming soon as they help me fill out my childrens DLA forms and she is going to talk through options for me to get more help (I currently only get 3 hours respite for my son a month from a charity).

Going to treat myself with a nice long hot bath tonight and a long read in bed propped up with millions of pillows!

stickywicket

Diclofenac suppositories? They're not still prescribing those are they? Hardly a drug of choice for arthritic fingers. Back in the '70s I used to spend hours chasing them round the bathroom. In the end I had to enlist Mr SW's help - a test of any marriage I can tell you even though we were both young and foolish at the time. Now that we're merely foolish I don't think it'd work.

Good luck!

flutterbye

Kate....sorry to hear about the problems you are facing. I am new to this forum too and have learned a lot by reading through as much as I can on here and notice that everyone is so helpful and caring. I hope you have a good understanding doctor who will do his/her best for you and you get all the help you can to help with your children.

dreamdaisy

Kate, this is big deal and the shock of this will take time to settle. You are possibly about to embark on a ride on one of life's most demanding and extreme rollercoasters (actually, come to think of it, you are already riding one with your children, can you ride two at the same time? A different analogy may be required.)

None of us know how our versions of this dross will develop over time and many of us experience the sudden plunges of mood and optimism from time to time - well, I know I do. I am in my fifteenth year of this malarkey, so you would reasonably think that I would have gotten a grasp on matters by now but no: it still rears up from time to time, the worry and the fright and the dismay, 'tis the nature of coping with a chronic condition. Oh gawd, I didn't mean that to sound as negative as it does, I was trying to explain that we do know what this is like.

We will do our best to help you through these uncertain, early days of arthritis. We know our stuff and there is usually someone around to listen. Be kind to yourself, you will be feeling a whole gamut of emotions, all negative ones to boot, but we have all been there and done that. DD

tillytop

Hello MrsSparrow and welcome from me too!

As the other peeps have said, it IS a scary thing, when you are diagnosed, in your case most unexpectedly by the sound of it, with arthritis, particularly if you are of an age when, as popular "wisdom" would have it you are too young to have it! From what you have said, it is not yet clear what sort of arthritis you have but hopefully it will help you to know that, here on the forum, between us we probably have most, if not all, possible forms of arthritis and (and probably some impossible ones too ) and we vary widely in age too (I was 28 when I was diagnosed with Rheumatoid arthritis, nearly 16 years ago).

I can quite see why it is overwhelming for you at the moment and why your mind is probably working overtime wondering how things are going to be and how you will manage to care for your family. But, what comes across in your post is that, despite the difficulties, you are managing to take all the practical steps you can to make life easier and I really do admire you for your strength of character.

On the arthritis front, I think you will feel better once you have had your scan and you know what you are dealing with and what can be done to help and I really do hope you don't have to wait long for the scan.

We are a friendly bunch here on the forum - and pretty wise too I'd say so please do keep posting with any questions or general concerns. Hopefully you will find the forum a great source of support and it will help you to feel less alone with the arthritis.

Thinking of you.

Love Tilly xxx