Sick of being sick: Hi everyone hope your all doing ok... - NRAS

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Sick of being sick

Oxopinkyblue profile image
112 Replies

Hi everyone hope your all doing ok . Just a rant really like the title says I’m sick of being sick , when it turned midnight on the New Year’s Eve I said to myself this is my year I’m going to kick RA !!! Ha ha ha how wrong was I . I’ve been in a constant flare arms , elbows,knees, fingers , wrists , ankles , neck , back, . Why is the pain worse at night ? And before you ask yes I’ve been to the drs and they have given me naproxen and I’ve also called my rheumy and hopefully they will bring my appointment forward it’s in Feb for the nurse and April for dr anyway rant over im off to make my hot water bottles , yes I said bottles all 3 of them 1 for my knees 1 for my back 1 for my elbows

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Oxopinkyblue profile image
Oxopinkyblue
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112 Replies
AgedCrone profile image
AgedCrone

Oh I do feel for you....I well remember those days.

But for about 95% of us they do pass.Get on the phone to your Rheumy nurse and ask ...beg if you have to....to see if there is any possibility of getting a Steroid injection...SOON.

They are usually very sympathetic when you're going through one of these awful whole body flares.

Hope 2019 is the year you find all the right drugs.....they are out there...you've just got to find them.

Good luck...phone tomorrow!!

jojo_71 profile image
jojo_71 in reply to AgedCrone

Absolutely, exactly what I was going to say! There's no need, when we can have a steroid to stop flare. X

Sorry you are feeling so bad. Have you asked your clinic if you can be put on a cancellations list ? That’s what I do when I need an appointment before my next one. You need to be able to go with just a few days notice though.

I used to have lots of hot water bottles, all year round, but I’ve splashed out on an electric blanket and it’s the best thing I ever got, I wish I had got one years ago.

I hope you have a better day tomorrow.

VeronicaF profile image
VeronicaF

Hi Oxopinkyblue, what RA meds are you on? how long for? drink loads of water, stick to salads, cut out sugar for a couple of days, hot water bottles are very good

when you go to bed tonight put a cushion between your knees, it does help

ring the 48 hour line and demand they see you sooner for steroid jab

I know how you feel

rest, give in to it

its hard I am alright today but never know what tomorrow might bring

Oxopinkyblue profile image
Oxopinkyblue in reply to VeronicaF

I’m on 6 Sulfasalazine a day I have been on that since I was diagnosed so I think it’s not working anymore unfortunately 😷

VeronicaF profile image
VeronicaF in reply to Oxopinkyblue

god that's a lot, I was on that drug but only managed 6 days, it made me too ill, so took myself off them

no it doesn't sound as if they are working

how long have you been on then for? I have been on the H drug for 7 and half weeks

and they say they take 3 months to kick in

I use the ibrophine ? please excuse spelling plasters

and CBD oil

that helps me, it takes the edge off

I have it same places you have

I tried to stick to a very boring diet to help too, that does help too, until I break it and eat something nice :O) then pay for it

AgedCrone profile image
AgedCrone in reply to VeronicaF

I really don't think demanding treatment will bring the desired result.

I think rheumatology nurses are far more likely to be sympathetic & find an apoinment slot if we explain calmly & politely how much pain we are in & how bad we are feeling.

We all know that when in a bad flare it is very difficult to keep calm,...but if a nurse is demanded at every hour of the day...it probably won't put her in the mood to go that extra yard...by staying late or cutting short her lunch hour to see us.

You catch more flies with honey than vinegar.

sjhewitt42 profile image
sjhewitt42 in reply to AgedCrone

Love that saying AC xx

AgedCrone profile image
AgedCrone in reply to sjhewitt42

Yeah.....wish I could always manage it!

Oxopinkyblue profile image
Oxopinkyblue

5 years and Sulfasalazine had worked pretty well but it’s time is up like the saying goes all good things come to an end I’m pretty sure they will try hydro

Oxopinkyblue profile image
Oxopinkyblue

I want to try cbd oil but where do I start I don’t have a clue

VeronicaF profile image
VeronicaF in reply to Oxopinkyblue

you need to look up CBD oil brothers on internet

I have the green one but its a case of finding the right one for you, the blue one makes me feel ill but someone on here had the green one and that made them feel ill

so get some samples

you start off carefully, one drop per day under your touge, and slowly two drops and so on

slowly does it at first

in reply to VeronicaF

Forgive me for being a bit thick but are there any contraindications for cbd oil and RA meds? Lots of people talk about using it, I think I need to look up about it.

VeronicaF profile image
VeronicaF in reply to

I haven't heard any? I was told, do and take and use anything that will get me through the weeks before meds start kicking in and that what I am doing

in reply to VeronicaF

Is that what your rheumy told you?

VeronicaF profile image
VeronicaF in reply to

yes :O))

Kalimera57 profile image
Kalimera57 in reply to VeronicaF

I take it Veronica and it really helps me to sleep. I asked my rheumy when she thought we could have it on prescription . She hoped not too far away and said quite a few of her patients were taking it and getting relief. My cousin also had RA and his consultant who also had it told him to take it as she did too!

VeronicaF profile image
VeronicaF in reply to

also I been using CBD oil for months a with no problems

Victoria-NRAS profile image
Victoria-NRASPartnerModeratorNRAS in reply to

Hi Kitty

Firstly, you're not thick at all! It's a very good question, but as we're not medically trained on this site it is always best to check with your rheumatology team before starting any supplements. I've not heard of CBD oil interfering with RA meds, but it is always worth checking, as some complementary therapies certainly can interfere with them.

Kind regards

Victoria

(NRAS)

in reply to Victoria-NRAS

Thank you Victoria. I was just asking as Veronica was taking it and thought she must have checked. I know people aren’t medically qualified to advise. I also wouldn’t take anything without discussing with my rheumys first. I’m too scared to do things like that ! 😊

AgedCrone profile image
AgedCrone in reply to Oxopinkyblue

Please ask your rheumatologist or Rheumy nurse before trying any complimentary treatments.

What suits one might not suit another.

VeronicaF profile image
VeronicaF in reply to AgedCrone

I rang just before xmas, and they rang a Rheumy,and they rang me back and said it was fine but of course ring for yourself about you

AgedCrone profile image
AgedCrone in reply to VeronicaF

What I was saying Veronica is it best not to DEMAND to get an appointment.

The rheumy nurses are extremely busy, & they work very hard to help us and I'm sure they will be far more likely to fit us in to a slot if we ask nicely......rather than demanding any sort of treatment.

I wasn't saying don't call for help...just don't go in with all guns blazing.

VeronicaF profile image
VeronicaF in reply to AgedCrone

??? sorry Agedcrone confused? Oxopinkyblue asked me where do you get CBD oil from,I told them

then came check you can have it

I said I had asked for myself only and got the okay

and now this answer, sorry I am confused

VeronicaF profile image
VeronicaF in reply to AgedCrone

Ahh I see where your picking at

my sentence here "ring the 48 hour line and demand they see you sooner for steroid jab"

it wasn't ment to mean beat them with a stick unless you get help, it was meant to be you, need help

silly me I should have put ask.

I will be very careful in replying to anyone who might need help with advice in the future

as everything I am saying on this thread seems to be being pulled up

in reply to VeronicaF

Don’t worry Veronica, things can get jumbled up with all the replies and posts, it’s confusing.

AgedCrone profile image
AgedCrone in reply to VeronicaF

IT is easy to get the wrong end of the stick, today "A" seems ro reply to "B but it goes to "C"!

It's the end of the week, the computer is tired! !

AgedCrone profile image
AgedCrone in reply to VeronicaF

No I'm not pulling you up Veronca... I'm just saying that before we take anything together with our RA meds we really must run it past our rheumatology nurse.

Some new members might not realise that.

Some supplements which taken on their own, when you don't have RA, or any Auto Immune disease & aren't taking meds Can be perfectly fine ...but when our body chemistry is being changed by the medicine we are taking that doesn't always apply.

I'm sure none of us would want to make ourselves feel worse by taking anything unsuitable would we?

VeronicaF profile image
VeronicaF in reply to AgedCrone

but when someone is asking me about CBD oil I am just answering that question

there are loads of threads on CBD oil, loads

people talk all the time about taking it, its harmless the site I gave, they take all the nasties out of it

I just feel on this thread I being pulled up on trying to help someone

Kalimera57 profile image
Kalimera57 in reply to VeronicaF

I take it Veronica and my cousin who had RA did as his rheumy( who also had RA ) told him to. I saw my rheumy in Dec and told her I was taking it and she said quite a few of her patients were and getting relief. Hopefully, in a year or 2 we will all be offered it on prescription! When you think of all the unpleasant side effects from some of the meds that some of us take .....

VeronicaF profile image
VeronicaF

theoriginalalternative.com/

VeronicaF profile image
VeronicaF

theoriginalalternative.com/...

Mmrr profile image
Mmrr

I feel for you.

Oxopinkyblue profile image
Oxopinkyblue in reply to Mmrr

Thank you I’m really struggling to get in a comftable position to try and get to sleep but I’m finding it a tad hard !!! It will be another sleepless night again

VeronicaF profile image
VeronicaF

I got a tampur mattress in the end

I LOVE my bed now, love it

I hated going to bed before

Oxopinkyblue profile image
Oxopinkyblue

Ooh I know I used to love my bed now it’s a love hate realationship have a great sleep though when I haven’t slept for days 🤭

VeronicaF profile image
VeronicaF in reply to Oxopinkyblue

I know the feeling, the mattress was very expensive, but we bit the bullet and got it on the never never.

I had to get some sleep as every turn was ouch ouch cry cry

it was cruel

but now, oh my, I can turn and no pain

it supports my body and its like sleeping on a pillow

so even though expensive its worth every penny

I am up now, because I have stomach problems, not because of pain

sylvi profile image
sylvi

Oh my darling what can i say that hasn't already been said,not much i suppose. I think we all dream of beating RA,but it ain't going to happen,remission probally cured no way. I wish for you brighter days not better days just brighter days darling. Hugs.xxxx

Oxopinkyblue profile image
Oxopinkyblue in reply to sylvi

Thank you lovely 😊

Yogi-bear123 profile image
Yogi-bear123

I read( can’t remember where.. read lots of upto date scientific journals) that they might get a cure in 10 years for psoriatic arthritis ( which is what I’ve got) celiac disease also a cure sooner they hope.. haven’t really read up on ra so much. I do know how u feel ...all dmards ( and mixtures of) and 3 biologics down the rd and 3 years worth of steroids ( which thankfully do help) flaring atm in my hips feet , knees and eyes😟 went to a top pain guy in London who’s put me on low dose amitriptalin for lower back nerve pain.. any swelling irritates a damaged nerve.... am on 20 mg atm and will have to up my dose to 30mg I think... it does help u sleep.... plus mixture of tramadol and tranmacept through the day..... plus low dose pred. ( higher blasts when needed... like atm!)Def pain is more controlled than used to be ,but waiting for the day when I find a drug that works without side effects that mean i have to come off them! I’m nearly 60 but if I were young I would feel hopeful that there will be a cure eventually coz the clever people that work on such stuff are working as we speak! In the meantime waiting for my next drug and crossing my fingers. Hang in there....

Oxopinkyblue profile image
Oxopinkyblue in reply to Yogi-bear123

Thank you hope you feel better soon too 😘

VeronicaF profile image
VeronicaF in reply to Oxopinkyblue

try to stay positive and strong, your get on the right drugs and feel better again

just lots of TLC for now

Jaxine profile image
Jaxine

I use 4! I bought a 3 ft stocking shape one so I could wrap it round me but I found i couldn't manage the weight. I agree the nightime is the worst spent many nights crying myself to sleep. That was only 2 weeks ago however, I have no flare feeling better and I've only been on Mtx for 4 days.

Oxopinkyblue profile image
Oxopinkyblue in reply to Jaxine

Where’s the big one from sounds amazing x

Jaxine profile image
Jaxine in reply to Oxopinkyblue

Amazon. Looks like a Xmas stocking, it's long enough you can wrap it round your neck and keep it your hands soothed, or alternatively wrap it round your legs

Lynniechinny profile image
Lynniechinny

Sounds like we’re both in the same boat!

I’ve only been diagnosed for nearly 2 years, but god have my symptoms ramped up,after coming off Methotrexate due to horrendous side effects, currently waiting for Consultant appointment on Thursday, can’t wait!! .....already been through RA nurse, ( Steroids for another month) 😩 seems the Leflunomide not working after 12 weeks!

Just a mention about hot water bottles, have you tried wheat bags, they can be heated in the microwave, then shape around shoulders better than hot water bottles, just a thought.

Big hugs fellow sufferers. 💕

VeronicaF profile image
VeronicaF in reply to Lynniechinny

I use a wheat bag round my neck, it works wonders

Oxopinkyblue profile image
Oxopinkyblue in reply to VeronicaF

Yes I have one of those as well lol

VeronicaF profile image
VeronicaF in reply to Oxopinkyblue

Hi Oxopinkyblue, I am being very careful how I write this, but on personal experience-I am going to get a foot warmer, to help my own feet, that might help my own toes

I have ordered it from e bay it was only 12 pound, you plug it in or sorry I will plug it in in my own socket

in reply to VeronicaF

I’ve often thought of getting one of those, is it one that’s like a big slipper thing that you put both feet in? Please let us know if it’s any good.

VeronicaF profile image
VeronicaF in reply to

thank you kittyj will do

just ordered myself these gloves too

ebay.co.uk/itm/Anti-Arthrit...

nomoreheels profile image
nomoreheels in reply to

Yes, Kitty, like a big boot. Wouldn't be without mine. I get mine from Lidl, they had them in before Christmas, £14.99 so they may have the odd one still. There are 6 heat settings & 90 mins auto cut off.

They're a godsend if your feet are affected. I have mine on now as I've been on my haunches shovelling up apples & didn't realise til I came in how cold my feet had got, my toes are playing billio. This is an old link but it gives you an idea what to look for hotukdeals.com/deals/big-sl...

in reply to nomoreheels

Great, thanks nomoreheels. My feet and ankles really play up in this weather and my house is so draughty. No Lidl here but will get hubby to watch out for one.

nomoreheels profile image
nomoreheels in reply to

You're welcome. I hope you find it helpful if you do get one. Pretty sure you will as it sounds as though we have similar problems, except I thankfully no longer live in a draughty house but do empathise!

VeronicaF profile image
VeronicaF in reply to nomoreheels

sorry for snapping at you nomoreheels xx

nomoreheels profile image
nomoreheels in reply to VeronicaF

I don't think you did did you? Unless I've missed something as not been on the site today. 🤔

VeronicaF profile image
VeronicaF in reply to nomoreheels

yes I was a bit :O)

Oxopinkyblue profile image
Oxopinkyblue in reply to VeronicaF

Fab idea let me know how you get on

I am also going through an horrendous flare just now and looking back I seem to go through one every year at this time. I wonder if it is the after effect of the hustle and bustle of Christmas, the colder weather or just a co incidence. You asked why the pain seems worse at nights and I once asked my GP that question and her answer makes sense. She said that when you lay in bed and relax, all your muscles and joints go into relaxation mode so they don't help to support the muscles and joints that are the worst and also that you are not doing anything to take your mind off the pain when you are in bed. Like others have said, getting a tempur mattress has been wonderful for me and so much better. I notice the difference when I go away on holiday and sleep on an ordinary mattress, so if you possibly can get yourself one it is well worth it.

Oxopinkyblue profile image
Oxopinkyblue in reply to

I’ve just had a look at prices holy moly !!!! But they sound like they are worth it

jojo_71 profile image
jojo_71

Hello!

Agedcrone said above, but I'll reiterate. As soon as I start flaring I ring rheumy line, and they often get me in by next day for a steroid.. Kenilog.

Everytime. And it works wonders.

Definitely call and ask..

Have you had one before?

Take care

Jojo x

Oxopinkyblue profile image
Oxopinkyblue

Oh wow thank you to everyone for your lovely comments ! I would like to let you know that everyday this week I have left a message for rheumy nurses but not one call back I don’t know about your area but my area is ( excuse the french ) SHIT but will continue to keep calling keep leaving messages , I hope everyone of you has a lovely pain free weekend xx

VeronicaF profile image
VeronicaF in reply to Oxopinkyblue

Thank you Oxopinkyblue, wishing you the same this weekend too xx

jojo_71 profile image
jojo_71 in reply to Oxopinkyblue

Hi again.

I liked your reply, but in Facebook world I would have put an angry face. You are right, they are shit.

Having a team that you like, trust and can depend on, can make all the difference in the world.

I was lucky, as a very young girl, with bad RA, my docs sent me not to my local specialist, but to one a bit further away.. And they (newc) have been wonderful..

I wonder.. Are we allowed to change specialists, hospitals etc if we need to??

Or want to? Even if its just because another one have more staff, and so can actually be there for us, if we need them..? I wonder has anyone done this?

Take care, I hope you are ok tonight. Xx

Maggiemae58 profile image
Maggiemae58

I feel sorry for you Oxopinkyblue😢. I know the pain your going through. I pray your Rheumatoid Dr can get you in sooner.

Hospitals all seem to be so different. It seems that some get answers from the nurses straight away and get a steroid injection almost as soon as they ask for one. I can ring a nurse at any time and they usually ring back fairly quickly and sometimes have given me an injection but not always.

However, I was once at a hospital where the nurses were only there for two mornings a week and often weren't even there at all. Once I was in a very bad way and was asked to go there for a possible injection. This involved my husband taking time off work to take me as I don't drive and it was about 45 minutes drive away. When we got there, I was told that I couldn't have an injection as I had only had one three months before. I burst into tears but they just looked at me as if I was a nuisance.

Another time I was in a bad way and asked them for a steroid injection as we were going away and I couldn't walk properly. The nurse asked where we were going and when I said it was to Harrowgate, she said "Oh well, you won't need an injection because the sea air there will do you good" she is obviously not good at geography because there is no sea at Harrowgate. I am glad I am not with them now.

lornaisobel profile image
lornaisobel

Im also sick of being sick and looking toward the future is awful - constantly, year in and year out being sick and getting sicker as I get older - what to do ??? I use an electric blanket - I find it better than hot water bottles. If you find a solution to 'being sick' let me know xx

AgedCrone profile image
AgedCrone in reply to lornaisobel

I am old lornaisobel, & I certainly have NOT got sicker & sicker, in fact with the sometimes horrible drugs we have to take, I have got better & better.

So don't be so down & pessimistic ...as soon as you get settled on the right drugs for you & feel a little easier you will be able to look forward to enjoying life again.

Although RA is not curable it is certainly controllable ....so cheer up, your future need not be all doom & gloom!

lornaisobel profile image
lornaisobel in reply to AgedCrone

Thank you for your reply - its just that im so sick of trying - im in my 70s and have to work - no pension as such - so im exhausted without the RA with the RA ive had it. My husband (who is not supportive and never has been has just before christmas served divorce papers on me - he tells me im useless and lazy so im sick of being sick and sick of trying to be positive i would really just like to go to sleep. Thank you for your kind thoughts x

AgedCrone profile image
AgedCrone in reply to lornaisobel

I am so sorry to hear that lornaisobel. You really now should go to the Citizens Advice Bureau where you live, & they will find you some legal representation to deal with the divorce to ensure that you get a fair financial settlement. ...so that you wlll have somewhere to live, & to tell you of any Benefits you may be able to receive.

You should really do that on Monday, alternatively if you have a lawyer, not your husband's lawyer, do make contact at once.

Please do not sign any papers your husband asks you to sign,until you have spoken to a solicitor.

The telephone number & address if the CAB will be in the telephone directory, or the staff in the Post Office will have them.

In the meantime why don't you go back to see your doctor to see if he can help you at all ...maybe you need to change your RA drugs as you are feeling so poorly.

lornaisobel profile image
lornaisobel in reply to AgedCrone

I know you are right and im seeing a solicitor next week and hopefully will know better where I stand - thank you for your kindness xx

VeronicaF profile image
VeronicaF in reply to lornaisobel

Life is so cruel sometimes, and is so hurtful and so painful

I am so sorry to hear all this its not fair what your going through

no wonder your feeling how your feeling

its hard enough having RA wihout all this, and no wonder your not getting better, all this upset and stress

it doesn't mean you don't derserve love and happiness

sounds as if without your husband you will find this, and its your husband who has kept that door shut to you

although you can't see that at the moment

because I am not emtiional involved, I can see that.

when one door shuts another door opens, you got to hang in there to be able to walk through that better door of your life, even though its going to be a very hard step to walk through, through this new door will bring you happiness

this time next year, your read this, and see I was right plus because you wont have anymore hurt or upset or stress your also start to feel better

and you will know how beautiful you are and how liked you are as a person.

and your start to love yourself-like yourself and your be filled with so much happiness your wish you took that step into that new door soonr.

sometime we cling to all we know,thinking we don't derseve anything more better because we don't know there is better,we are so used to being treated that way, it becomes a way of life

and change is hard but its going to bring you a beautiful happy new door to walk through

just the first steps are going to be a bit hard at first

but your not alone

I am here and so is everyone else and we will hold your hand through every step

sending you big big hugs and lots of love love Vxx

lornaisobel profile image
lornaisobel in reply to VeronicaF

Im seeing a solicitor next week and its one that has some knowledge of the issues of domestic violence so will be better placed to understand things. I think when your ill and on your own you can only see the worst and I know i become very fearful - Im seeing my dr on monday again she is helpful. Your reply is so lovely and has made me feel more hopeful - thank you - hope you are feeling ok much love xx

in reply to lornaisobel

That all sounds good lornaisobel, I wish you luck. I have read some of your previous posts and you have put up with a lot. I’m sure you will feel much better once this is all over. Keep in touch, we will support you all the way x

lornaisobel profile image
lornaisobel in reply to

Thanks for your support - I will keep in touch xx

VeronicaF profile image
VeronicaF in reply to lornaisobel

good for you, you must be a very strong person to have been going through that for so long

the nighttimes are always awful times, but the light of the day makes you feel so much better

just keep reading what I have said to keep you stepping into that new happy door

lots of love to you xxxxxxxxxxxxxxxxxx

lornaisobel profile image
lornaisobel in reply to VeronicaF

Thank you so much for your support etc - I will keep in touch xxx

VeronicaF profile image
VeronicaF in reply to lornaisobel

please do

you know you could contact woman aid ,I sure they would be able to help you with advice and support, and I sure they will help you get your confidence back

womensaid.org.uk/

and they have a forum

survivorsforum.womensaid.or...

survivorsforum.womensaid.or...

0808 2000 247 Freephone 24hr National Domestic Violence Helpline

lots of love Vxx

VeronicaF profile image
VeronicaF in reply to lornaisobel

when you feel sh-t its hard to see that but Agedcrone is right, hang in there,there will be a light at the end of the tunnel, just got to keep strong,and lots of TLC for now

also as you get older,sometimes it takes a bit longer to bounce back than younger years,I know that to be true, just take some time but you will get there

big hugs to you xx

lornaisobel profile image
lornaisobel in reply to VeronicaF

Im just sick of being strong and I havent any family or anyone to provide TLC and i really dont think ive got that much more time to take but thank you so much for replying and i thinki this is the first time ever iv e felt like saying sod it im going to bed and going to sleep for ever xx

VeronicaF profile image
VeronicaF in reply to lornaisobel

no please don't do anything silly

I know how your feeling, been there feeling I can't go on like this-but I just been put on a drug and I feel its slowly working

so you got to hang in there

I will be here for you, I will hold your hand

you do matter and from one person who knows how your feeling to another I will be here for you

please tell me you wont do anything silly

lornaisobel profile image
lornaisobel in reply to VeronicaF

Now you have made me cry !!!! You are so kind - I will keep your email I wont delete it and I will read it when im really really really fed up and I will feel some one cares - now Im crying again Thank you for your lovely reply xx

VeronicaF profile image
VeronicaF in reply to lornaisobel

Ahh bless you, your not alone, your not!!! you are cared about

your just so tierd of the pain, I know

but you got to keep strong, you do matter, this will pass I promise you

you just to keep in there xxx

Mmrr profile image
Mmrr in reply to lornaisobel

It's hard at times, very hard, but nothing lasts forever and this too will pass. Ring your rheumatology helpline, or try yo get a vist to your GP , or use the NRAS helpline. Keep writing to us as often as you need. Thinking of you.

VeronicaF profile image
VeronicaF in reply to lornaisobel

I am not going until you tell me you wont do anything silly, let me know your going to be okay, I care about you, I really do x

lornaisobel profile image
lornaisobel in reply to VeronicaF

Im ok now thanks to you - you do need to get an electric blanket - When you get time send me some more kind thoughts xx

VeronicaF profile image
VeronicaF in reply to lornaisobel

I will, thank you for telling me your be okay, I will always be here to talk to, might not get back straight away but I will answer you, your not alone, remember that

and you do matter, and how you feel matter

lots of love Vxx

in reply to lornaisobel

Please keep talking to us lornaisobel, we really don’t mind how much you do it. Rather that than feel alone and fed up. It doesn’t help to not have support at home. We will be your support. Message me if you want to. I hope we can help you to feel a bit better x

VeronicaF profile image
VeronicaF in reply to lornaisobel

where the area you live? maybe someone here lives near you? and can come and have a cup of tea with you??

lornaisobel profile image
lornaisobel in reply to VeronicaF

Cumbria - near Whitehaven

Oxopinkyblue profile image
Oxopinkyblue in reply to lornaisobel

Brought a electric blanket today

VeronicaF profile image
VeronicaF in reply to Oxopinkyblue

yeah, let me know how it is, as I haven't got one of those

in reply to Oxopinkyblue

I bought an electric blanket a couple of months ago and it’s brilliant. Should have got one years ago.

Shalf profile image
Shalf in reply to lornaisobel

Hi Lornaisobel,

I have just come across this thread tonight. I feel for you and your situation so much. The more I read the more I felt deeply for you.

I also read your previous thread 3 years ago. This is very significant as that is a long long time living with rejection. I could read between the lines very easily and quickly that you were indirectly crying out for support, for someone to understand you and for someone who perhaps was in a similar situation or had been who could relate to your circumstances with your marriage and with RA.

My goodness! I am so sorry there didn't seem to be anyone at that time who could do any of those things for you really. I observed it was more to do with how great their partners/husband's were. It really isn't what a person who is hurting and who is feeling rejected wants to hear. I had read this thread first and it wounded me to read your husband is walking out on you. Divorce papers just before Christmas. Useless and Lazy. Yes, some of us can jump into another's shoes and feel how that would be. I certainly can and it's awful. Then to read back 3 years maybe more you have been suffering. There are one or two members I am aware of who like myself, live alone. I'm not married and I prefer it that way. You do not have to be alone to feel lonely and lonely when with someone is not a good feeling. Loneliness is a feeling of

abandonment and rejection. I know

folks who have felt this way in their marriage. To throw RA into the mix is just what I would describe as emotionally painful.

I thank Veronica for her heartwarming support and compassion. Her love and care at a time where it was evident you were feeling very vulnerable and upset. Veronica sensed that very quickly and was there for you.

Like Veronica , I want to help too. It's always said that ' We are all different - One shoe doesn't fit all'..........ETC!! This is usually related to meds and diets. The other thing that is different is people's lives. We all come from different backgrounds, have different circumstances, some have their lives pretty good , some are toiling to survive! We all share one thing, we have an Inflammatory Disease. You can't give advice to a person based on your own personal circumstances. I have read your comments/replies Lorna and I understand and know where you are at. I think it would be good to open up a thread of your own for further discussion as this one is another members thread which is fine but you can and will receive additional support opening your own thread. Hope I've put that across correctly, it's way past sleep time. Ra is a very tough disease to live with at the best of times when not controlled but to have an unsympathetic partner too is just too much for any individual to deal with in my opinion.

So for now I say goodnight and I do hope to speak to you soon.

Much love

Suzie xxx

lornaisobel profile image
lornaisobel in reply to Shalf

Thanks for your reply Shalf - the domestic violence has been going on for many years - it got worse when I got RA - I was more vulnerable and so ill I couldnt cope with it as I use to. As you say VeronicaF found the right words to make me feel 'better' and not so alone. I once phoned the NRAs helpline and they told me I wasnt alone - others were being humiliated and bullied by partners because they were ill. I asked if they could put these people in touch with me but nothing came of it! I suppose having RA is one thing but having a partner who is abusive is often felt to be something to be ashamed of. I will let VeronicaF know how I get on - she did help me - she made me feel valued. Take care- thank you again for your kind thoughts xxx

ps I have no idea how to open a thread as you suggested - in fact I dont know what a thread is !!!!

Shalf profile image
Shalf in reply to lornaisobel

That's ok! Don't worry. We can stay here. Do you mind if I ask some questions?

lornaisobel profile image
lornaisobel in reply to Shalf

Depends what the questions are !!!!!!!!

Shalf profile image
Shalf in reply to lornaisobel

Of course Lorna. I should have been more specific - apologies.

How long have you had RA? Is your GP supporting you in regards to your feelings as well as your illness?

Have they suggested counselling?

Have you any family/ friends you can trust/confide in? Is this man physically harming you? If so, have you been in contact with police?

Is there anyone we / nras can contact on your behalf if you cant?

There are numerous worries/ concerns when marriages in general fail. With an illness of any kind, that makes the separation far more difficult especially with finances and so on. As Veronica said, we are here for you. Xx

lornaisobel profile image
lornaisobel in reply to Shalf

Thanks for reply - the 'domestic violence ' has really been going on for a long long time - my RA nurse thinks he is the reason Ive got RA !!!. - stress etc. Im involved with all that you suggest and my Dr is helpful Take care and thanks again XX

Shalf profile image
Shalf in reply to lornaisobel

No problem at all. No one should tolerate that. Bullies make people feel like they have nowhere to turn and no one to help. Remember Lorna - That is just not true! Don't suffer for any reason. We are always here. X

VeronicaF profile image
VeronicaF in reply to lornaisobel

Ahh bless you, I ment and mean every word!! you are a very valued person and I do care about you as others care about you including shalf does on this site

I been quiet as I having bad stomach ache tonight and a few niggly pains, this blinking RA but I had to look in because I do care about you!!!

and your constantly in my thoughts and I hope knowing this helps you to keep you strong

lots of love and big hugs xxxxxxxxxxxxxx

lornaisobel profile image
lornaisobel in reply to VeronicaF

I do feel better - I think I was in shock with all the threats etc from my husband and of course RA rears its ugly head when you are stressed - Im seeing a solicitor at the end of this week who hopefully will let me know where I stand financially - I do hope your stomach feels better - I just take paracetamol for every thing Oh and an odd glass of Brandy at night is a great help. will let you know how things are going. Take care much love and thanks XXXX

in reply to Shalf

I do think this is a bit harsh on those people who did respond to lornaisobels previous post. In the one that I saw, lots of people responded to her question of not having an understanding husband. Not all of them said their husbands were wonderful and supportive. They were responding with how it is for them which is what was asked in the question. I do not know how many people messaged lornaisobel after that post. There were people saying that they were in the same situation. At the end of the day this is an arthritis support forum and people were responding to it from that angle. I do not think everyone reads all responses before replying to a question, but people did respond to what she was saying.

Anyway, I think people here are being supportive and hope that lornaisobel feels that we have been supportive, now and in the past.

Jules13 profile image
Jules13

Have you ever been on methotrexate. Did your Rheumy discuss all medications with you? I only ask because I was on sulphasalazine fir 6 months with hydroxychloroquine and it did hardly anything. Then they added methotrexate and within a month I was feeling better. I just wondered if you’d tried anything else?

Oxopinkyblue profile image
Oxopinkyblue

Hi no I’ve never had anything else been on Sulfasalazine for 5 years now and it was working very well have a look back at some of my first posts on here and I feel bad for being on here and not having pain !

Oxopinkyblue profile image
Oxopinkyblue

So guys just a little update the electric blanket makes the bed nice and toasty but my god I’m sweating like a pig !! Still in the same amount of paid had a moment on the bus today as I couldn’t get up due to my knees people just stare as you don’t look ill but ho hum pulled myself together , 😋

VeronicaF profile image
VeronicaF in reply to Oxopinkyblue

I hate it when its in the knees, that's the worst place for me out of everywhere and the neck

so I know the feeling, I haven't got that at the moment, just bowel problems

but Mmrr told me a good tip

a pillow between my knees at night in bed, my god it works, I use a little cushion,it really helps.

glad your electic blanket is lovely,it will be a god send in the mornings to you

AgedCrone profile image
AgedCrone in reply to Oxopinkyblue

Crikey.......Doesn't your electric blanket have a timer on it? You aren't supposed to leave it on High all night.

Try putting it on High to warm your bed, then turn it down to sleep!

I can set mine to stay on for 1 or 9 hours...usually one hour is long enough, but if you get chilly try for another hour!

Keep warm.....not boiling! Ha!Ha!

cariad68 profile image
cariad68

To me Naproxen works like poison.I get extreme stomach ache and cramp. You certainly need someother medication. I am trying vegie diet and cutting out gluton and sugar hopefully things might look up.

Oxopinkyblue profile image
Oxopinkyblue

I got nothing so far from naproxen not even pain relief

Oxopinkyblue profile image
Oxopinkyblue

Hey guys I finally have a appointment 29th January after crying on the phone as I couldn't even get myself dressed this morning I only have to wait another 2 weeks ! But it's better than a month take care everyone xxx

in reply to Oxopinkyblue

That’s really good news, I hope it goes quickly for you.

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