Please make it stop

stlucia

Hello everyone,

I'm sorry i don't post very often at all, but I do read the posts and try to keep up with how everyone is.

I'm not really sure how to explain how I feel but I just know that I can't cope with much more of this RA. I've had it for 11 years since I was a teenager, and in the last year it has got worse and seems to be continuing to get worse even though the Mtx has been increased significantly.

I can't stop the pain all over my body. If it was just one area I could manage but it's all over and my muscles hurt too.

Next week I am seeing the rheum nurse and not sure what to say to her really. Sorry this is all really garbled, I'm so tired and it's hurts, just trying not to cry.

Any ideas at all?

xx

chris7

Hi

So sorry you having a bad night there. You post as little or as often as you like. I can't offer any advise on RA at all, as in the OA camp but just wanted to send a gentle hug incase you are still up.
Am sure others will be along tomorrow to send more practical advise.
Hang in there. ((( )))
Chris

stlucia

Thank you so much, hope you are doing ok

chris7 wrote:

Hi

So sorry you having a bad night there. You post as little or as often as you like. I can't offer any advise on RA at all, as in the OA camp but just wanted to send a gentle hug incase you are still up.
Am sure others will be along tomorrow to send more practical advise.
Hang in there. ((( )))
Chris

chris7

Am fine here love, just trying to catch up and didn't want you to feel so alone at the moment when I saw you there. Hope you do manage to get some rest. You have had a long hard struggle by the sound of things. Do be honest at your next appointment and I hope they can get you on some more effective meds. It must be so frustrating, you do have my sympathy. Do keep posting, people will support you in whatever way they can. It doesn't sound much but I do know it can help just a little to not feel you are battling on your own. Will look in on you tomorrow.

Chris x

dorcas

So sorry to hear how bad your RA is just now...... no wonder you feel so desperate with the level of pain you're coping with.

From what you've said it does sound as though your Mtx just isn't controlling the RA... and maybe you need to ask the nurse on Monday to refer you to the Rheummy Consultant to discuss changing or adding to your current meds.
There are other treatments available and lots of us here are on anti tnf/ biologics as well as the Mtx and take different combinations of pain meds to make living with arther bearable.

Perhaps you could see your GP today to get some immediate pain relief?

Please remember we are here for you and as Chris said post as often as you want to. We are all in the same boat and understand how you feel so you'll never be left alone to manage the pain and frustration of living with arther.

Iris x

frogmorton

Stlucia

I am so sorry you feel so bad at the mo

I think for what it's worth taht you ahve every right to cry as you have been dealy a bad hand

If you cant wait till you see the nurse then get to your GP as dorcas suggets - if nothing eles he/she can give pain releif. If you can then when you get there you should BAWL if you want to. Let them see and understand your pain.

I am sure more can be done and that it may be time for them to look at diferent treament options for you.

You atke care and remember we are here for each other.

Love and hugs

Toni xx

williamlargs

stlucia wrote:

Hello everyone,

I'm sorry i don't post very often at all, but I do read the posts and try to keep up with how everyone is.

I'm not really sure how to explain how I feel but I just know that I can't cope with much more of this RA. I've had it for 11 years since I was a teenager, and in the last year it has got worse and seems to be continuing to get worse even though the Mtx has been increased significantly.

I can't stop the pain all over my body. If it was just one area I could manage but it's all over and my muscles hurt too.

Next week I am seeing the rheum nurse and not sure what to say to her really. Sorry this is all really garbled, I'm so tired and it's hurts, just trying not to cry.

Any ideas at all?

xx

Hi

I see you are on MTX, what anti inflams and pain killers do you take as well or maybe you don't?

Hope your feeling better today

tillytop

Hello from me too.

I am so sorry you are having such a rough time with your RA at the moment. I too have RA and I understand what it is like when you hurt in places you didn't know you had.

Clearly the mtx is not working well enough for you, despite the increased dose but there are many other meds out there so please don't despair.

I know how hard hospital appts are when you feel so bad - I always manage to get really upset so don't get the best out of my appointment. But the best advice I can give you is to try to make a list of your symptoms as they are at the moment, give it to the nurse at your appointment and ask the nurse to help you to get a meds review with the consultant asap. When she sees how unwell you are, she may even be able to talk to the consultant whilst you are there.

Do you have someone who will go into the appointment with you? I find this really helpful both in terms of moral support and in speaking up for me if get upset

And, as Toni has said, given your pain levels, perhaps the GP could give you some pain relief drugs in the meantime to tide you over.

Please do keep posting on here too if you think we can help - even it's just to listen.

Thinking of you.

Love Tilly x

dreamdaisy

Gets you down sometimes doesn't it, stlucia? If you are only on meth well, that doesn't seem sufficient to me. I have PA and am currently swallowing/injecting nine different things, plus some anti-biotics for a little extra. YOu say you are seeing someone next week, so list all the symptoms you have at the moment, pain, stiffness, mood, problems with moving/practical tasks etc, and get your meds reviewed. Your list will give them some insight and I hope that things can de done to help. I wish you well. DD

stlucia

Dear all, thank you so much for your replies. I've managed to sort myself out this morning and get some breakfast - even if it has taken me until 10.15!

To be honest, I'm almost scared to say that the medication isn't really helping as we are hoping to try for a baby next year and I am aware that I will have to come off all meds about 6 months before we start trying...and if I start off on new medication then they might want me to try it for a while...ugh! I just don't know what to do.

I'm on 15 mg of Mtx (having been on 7.5mg for 10 years, and then upped to 10mg and then 15mg in the last year), and I have been on Diclofenac but don't feel that really helps either!! I'm not sure what my options are anymore. I've been on Sulphasalazine with no effect, in the past.

Thanks so so so much for your help and support.

Lucia x

stlucia

P.S. I totally forgot to say - the list idea is brilliant....I will make one now! How much paper do you think I ought to get out? A whole ream maybe?!!!

skezier

Hi Stlucia,

I am sorry your having a bad tie there and I think as the others that you need a meds review. There are so many combinations out there and this one your on doesn't seem to be working too well so I would ask the rumo nurse about that. It might be you could see the rumo again?

Can your own doctor help you with some of the other meds, ie the pain and information controls? Might be worth seeing. Its not good when every day seems a strain and everything hurts. I see the pain clinic for the oa and its also helping the pa so that might also be something that would help you?

I really hope you can get a bit of help and start to feel much better soon. When you see the nurse run pain levels etc past her but I think also it might be a good idea to see your gp as well. Cris x

williamlargs

stlucia wrote:

Dear all, thank you so much for your replies. I've managed to sort myself out this morning and get some breakfast - even if it has taken me until 10.15!

To be honest, I'm almost scared to say that the medication isn't really helping as we are hoping to try for a baby next year and I am aware that I will have to come off all meds about 6 months before we start trying...and if I start off on new medication then they might want me to try it for a while...ugh! I just don't know what to do.

I'm on 15 mg of Mtx (having been on 7.5mg for 10 years, and then upped to 10mg and then 15mg in the last year), and I have been on Diclofenac but don't feel that really helps either!! I'm not sure what my options are anymore. I've been on Sulphasalazine with no effect, in the past.

Thanks so so so much for your help and support.

Lucia x

Very much a shot in the dark and I ain't no doctor. I began to find the diclofenic wasn't helping and now I combine it with paracetomol and hey presto. No doubt it will wear off too eventually but may help short term till you see your gp or rheumy. I'm on MTX too.

stlucia

Genius! I will have another shot at it, thanks.

williamlargs wrote:

stlucia wrote:

Dear all, thank you so much for your replies. I've managed to sort myself out this morning and get some breakfast - even if it has taken me until 10.15!

To be honest, I'm almost scared to say that the medication isn't really helping as we are hoping to try for a baby next year and I am aware that I will have to come off all meds about 6 months before we start trying...and if I start off on new medication then they might want me to try it for a while...ugh! I just don't know what to do.

I'm on 15 mg of Mtx (having been on 7.5mg for 10 years, and then upped to 10mg and then 15mg in the last year), and I have been on Diclofenac but don't feel that really helps either!! I'm not sure what my options are anymore. I've been on Sulphasalazine with no effect, in the past.

Thanks so so so much for your help and support.

Lucia x

Very much a shot in the dark and I ain't no doctor. I began to find the diclofenic wasn't helping and now I combine it with paracetomol and hey presto. No doubt it will wear off too eventually but may help short term till you see your gp or rheumy. I'm on MTX too.

williamlargs

It's worth a try. Good luck.

I give the diclofenic and paracetomol a miss for a couple of days a week but struggle without them. Also want to see whether the MTX is kicking in yet or not. So far not is the case but only 5 weeks in.

My theory is that if I miss them a few times then maybe they will be affective for longer.

Kind Regards

tkachev

I have had R.A nearly 11 years too. Mine got much worse in year 4 but I had just had my daughter. I hurt all over too. Every single movement was torture, I lost 2 stone in 2 months. Over time I had various medications and reached the top end Methotrexate and when this stopped helping they put me on anti-TNF Humira which has been fantastic for me. That all over pain went and I was Just left with individual joint pain from damaged joints(I took a year to be diagnosed in the first place and had no medication at all for that first year).
The rheumatologists should know this by looking at your blood results but do let her know how much pain you are in. Its their job to help you,

Elizabeth

tkachev

And let them them know you want to try for a baby as they can factor this in to the plan. They will probably tell you to get the pain side sorted first,
I was very lucky and had all my children pre-methotrexate. There are others on here who have been through the 9 months without MTX but Im sure youve read their stories.

Elizabeth

frogmorton

Glad you have been able to eat today Stlucia.

Very good ideas on here. I do thing willian's is so worth a try. Sometimes the power if each is more than both when taken together....if that makes sense - like co-codamols.

As Elizabeth says though tell em you want to try for a baby too so it can be taken into account. They should try to help you.

Love

Toni xx

stlucia

Thanks so much. Such great advice. I will try and quip myself with all this before I go and see the nurse. I always seem to get upset when I see her as I don't really talk about my arthritis with other people, and then it's only when I talk about it with her, it all comes pouring out!

All my bloods are normal - every time! Ever since I was diagnosed I think!!! Typical isn't it...so I'm flaring up and have hot joints and feel grim and think oh it's ok, they'll take notice of the bloods....and then nothing!!! Is that odd?!

x

frogmorton

Our messages just crossed

Bloods eh??

We are always saying that on here how the belie the actual evidence!!!

Blumin bloods :roll: grrrr!!!!

Love

Toni xx

stlucia

I can go and take some more paracetamol now woop woop!

Why do medics focus so much on the bloods when they don't seem to point to the issue at hand?! I have been really poorly in hospital with infections and the bloods show....guess what?.....no raised inflammation! Very odd. I had a throat infection recently and apparently that normally would raise the bloods and....no! Nothing! Not a sausage :-)

How do people cope with the general 'been run over by a bus' feeling?

I am feeling more positive thanks to everyone here - I REALLY appreciate all your support, it is much needed at the moment. Thank you.

x

lindalegs

Hi Stlucia,

I, too, am a rheumatoid.

Along with my usual meds Paracetamol work also for me and during 'run-over-by-bus' times I take them every six hours so that they keep me going throughout the night too and I also have no chance of over-dosing. They're better once you've built them up in your body and you'll soon know when you're getting better because you'll start to forget your 'next' dose instead of living for it.

Hope you do start to feel better soon.

Luv Legs

stlucia

Ooh we sound like shapes....circle, pentagon, rheumatoid, parallelogram...!

Thank you for the encouragement with the paracetamol. I will keep taking it over the weekend and hopefully that will bash it all on the head.

How are you today?

x

lindalegs wrote:

Hi Stlucia,

I, too, am a rheumatoid.

Along with my usual meds Paracetamol work also for me and during 'run-over-by-bus' times I take them every six hours so that they keep me going throughout the night too and I also have no chance of over-dosing. They're better once you've built them up in your body and you'll soon know when you're getting better because you'll start to forget your 'next' dose instead of living for it.

Hope you do start to feel better soon.

Luv Legs

bluelobster

Hello,

Like you i don't post much on here either, but i read often.

Right, i would ring your clinic secretary and ask if you can see the consultant. Even though you are being monitored by a nurse you will still be under the responsible care of a consultant. therefore, iwould get in touch with his secretary in the first instance.

This happened to me a few years ago. i started to get pain again and in conjunction with upping the MTX i was started on an additional therapy and i have been ok since.

The only thing i will say as an NHS manager - be persistent as you need to be sorted as quickly as possible and non-speed can be an unfortunate specialty of ours!

stlucia

Thank you, that's is good advice and you would know being an NHS manager! My trouble is that I would tend to just get on with it and not think that it's serious enough. I'd love to know if there was any where on the internet where I can find out how severe my arthritis is so that I can get my brain to catch up!

bluelobster wrote:

Hello,

Like you i don't post much on here either, but i read often.

Right, i would ring your clinic secretary and ask if you can see the consultant. Even though you are being monitored by a nurse you will still be under the responsible care of a consultant. therefore, iwould get in touch with his secretary in the first instance.

This happened to me a few years ago. i started to get pain again and in conjunction with upping the MTX i was started on an additional therapy and i have been ok since.

The only thing i will say as an NHS manager - be persistent as you need to be sorted as quickly as possible and non-speed can be an unfortunate specialty of ours!

williamlargs

The internet is a great tool but also contains a hell of a lot of s..., sorry nonsense :P

This forum is one of the best places to find out things I can assure you.

Good luck