Just when I thought it was safe to go back into the water

martyn

Brief History
Summer 2006 - I started getting pain in my legs
Nov 2006 - Diagnosed with Seronegative arthritis
April 2007 - Diagnosed with depression (Just and I'm still here)
Still in lots of pain - pain killers take the edge off but not everything
December 2007 - start a new not so pressured drop (stop taking the antidepressents)
2008 - slowly fallling apart - in pain/suffering from depression - trying to cope and not succeeding
Dec 2008 - Find out that my wife of 20 years was cheating on me
2009 was a struggle - some good points - A friend went to the doctors with me and I remember him shouting at the doctor and banging on the table saying he doesn't need any more pain killers there must me something else
I was given steroids - it was kind of a miracle or felt so after 3 years of pain to have none
I've had one flare up since then in august 2009
Slowly been feeling better and putting my life back together (I'm divorced now) been on Methotrexate up until December last year (I don't think it ever did me any good unless you count feeling sick.
10 months of improvements - very little pain, gone back to being a scout leader, have a new lady in my life
and now it's back
My hands feel like I've been hitting them with a hammer, I'm so tired - it hurts to move, it hurts even more to stay still (I'm taking tramadol, ibuprofen and paracetamol)
I know I'm feeling sorry for myself but 'Why me' keeps floating to the surface.
Trying to explain to my new girlfriend that I'm ok, as she see's me crunched up in a ball more or less shaking because it hurts so much.
Trying to get the courage to tell my boss, I will be late tomorrow because I need to go to the doctors

I will not let this thing beat me again

dreamdaisy

On the plus side you have been here before and beaten it. That is no mean feat and you deserve much credit for that. Another plus: you have re-built your life, again no mean feat and you deserve much credit for that too. Another plus: you have a new lady who (hopefully) will stay by your side as you negotiate your way thro the next tricky few days/weeks/months.

On the negative side, it's come back. It does that, arthritis. It toys and plays with one, it lulls you into a false sense of security then pounces and has another go.

Back to the pluses: apparently the meth was helping, despite the nausea. I gather from your post that you stopped it in December, so whatever meth was in your system has now trickled out and so the arthritis has returned. How about asking if you can try injected meth? You have smaller doses as the liquid is more powerful than the tablet form, and nausea becomes much less of an issue as the stomach is by-passed. If the nausea is still an issue then an anti-emetic can be prescribed to help, plus increased folic acid. You could also ask about briefly going back on to the steroids (they are lovely things, they are the only things that keep me going but I am devoting this year to getting off them - they are far too dangerous for long-term use.)

As for the 'Why me?' there is only one answer: why not? It's no wonder you are feeling so low, you thought you had this licked and it's come back. It's a kick in the teeth for sure. I think you should seriously consider re-starting the meth - it did help you even if you didn't see that at the time, I know it's not what you want, none of us do, but sometimes we are not given the choice. Hopefully finding here will help a little - we do understand what it is like and we will do our best to help and support you through this bad patch. I wish you well. DD

barbara12

Hi martyn
Gosh...and welcome to the forum
I bet you feel better after letting all that out, I am a great believer in talking, and sometimes its easier to talk to stranger then your family .
We are all in the same boat to some degree or another, and the support you will get on here is brilliant.
Sorry I cant comment on your meds, but like DD says you have beat it before, and you will get there again.
Have you been referred to a pain clinic, they can help alot with your meds.
I do hope you stay with us, apart from the support , you can get all sought of info on Arthur.
I do wish you well
Barbara x

julie47

Hi martyn

Sorry you are back to square one after thinking you had beat arthur at his game.
I just want to wish you luck with the doctors appointment tomorrow and hope he can start some sort of treatment right away.
You have been strong before and controlled arthur, you can do it again.
We are all behind you.
Juliepf x

rugbygirl

Sorry to hear that you have been severely affected by this disease after thinking that things were improving for you.

I am sure that your boss will understand that you have got to go to the doctors - they shouldnt penalise you for a doctors appointment.

Your new lady will hopefully understand everything and will support you no matter what. You need to be able to explain everything to her and where possible take her to the appointments with you because she might have questions herself and she would be able to ask the doctor to put her mind at rest.

Like DD has said, start taking the meth again. If the drug is going to help you keep arthur at bay and stop it being so agressive then it is obviously helping.

It might feel like things are going to crash around your ears again but you have the support of people who really understand what you are going through and how this affects you not only physically but emotionally as well.

We all fight with the emotional side of things and feel that we have been dealt a bad hand in life but we are all able to deal with this because we have the support of the people here, the people in our lives and the medical profession. We might think 'why me', 'i'm too young for this', 'I thought I had beaten this' and many others.

Unfortunately we know that we are never going to be cured of this. We might be able to cope better some days, months, years, but we will never be free of it. We have to face the fact that some days are going to be harder than others and if we can go two or three days without pain we think its is a miracle. You have been lucky to beat this before and nothing is saying that you cant or wont beat this again. Stand up (the best you can), hold your head high and be prepared for battle. We are all behind you in this battle, and we are beside you because we are all going through this with you.

Dont give up, and try not to feel down. If you do come here and have a chat - someone will be along to put a smile on your face and help you to deal with the demons.

Take care

madwestie

Martyn, You have been doing so well don't let the disease get you down, you do need to see the doctor about some meds to reduce the inflamation i have injected meth as i could take the dose in tablets needed to keep my Ra under control, the pain killers will not work on there own. Like DD said the meth does work even if you don't think it is.
You need to explain to your ladty friend so she knows why you are in pain, she sounds from your post as if she is worried about you.
Unfortunately there is no reason why some people suffer more than others it is just one of those things.
I hope you get something sorted out soon.

Take care

Tracey

martyn

First of all - Thank you

I was so down this afternoon - 3 nights not sleeping and feeling like I'm carrying the world round all the time - been over a a year since it was this bad.

I'm not sure about MTX - I was on it for 8 months and still in lots of pain
I also seem to be strange - My joints don't hurt it's tendons and muscles that are hurting - My achilles tendon has swollen up to 1/2 inch across

and it came back all of a sudden - Saturday I started to notice it
But today I had my tell tale symptoms
I over heat at the slightest thing - I walked up 1 flight of stairs and sweat started pouring off me
I got to the top and was completely wiped up
I would fall asleep at my desk but I hurt too much.

Arranged with work I will be late in tomorrow so I can see the doctor
Going to ask for steroids - I've had 2 monthly doses twice in my life.

I really really don't want to go back on MTX - It makes be feel quesy but I can cope with that what is the killer is I catch every cold - had 3 chest infections last year. (I have kids that go to school so I think they bring me little presents home!)

But we will see what the Doctor says

Thank you support - just what I needed this afternoon

Martyn

tkachev

Hi Martyn,

similar to you my arthritis got better initially in 2000-2003 then I had my daughter and was hit by a massive flare, painfully bedridden with a new born baby and 2 autistic sons! This was only controlled by stronger medication. I was on sulfasalazine, plaquenil, Methotrexate 22.5mg, iron tabs,ibuprofen and finally as this combination was not helping Humira. You need to be in contact with the rheumatology team (referrd by GP) so they can help you.
As DD said you have done so well after many setbacks and you can do it again.
I am doing well now with just the odd setback.
Elizabeth

dreamdaisy

Meth is supposed to slow the damage but it does not get rid of the pain. Nothing does, not even the pain dullers. Sweating? I am sitting here with the fan going and a fresh dry hand towel. At night I sleep with my pillow wrapped in a towel, I always have a hand towel near, and on the very bad episodes I sleep on a towel. The sweats in my case are caused by the steroids, the humira and the tramadol pain relief. It's a nuisance yes, but it doesn't hurt - things that don't hurt are a bonus, I think.

If you resume the meth then you should also have a flu jab - as meth reduces your immune system you are left more vulnerable to colds and infections. I have hand gels everywhere, I teach at home and every lesson begins with a squirt of gel for the child and me (I see a number of children from different schools.) All guests also receive the same treatment. No-one minds once I have explained the reason why. I have not had too many infections, despite being on meth and humira (both lower the immune system) and I think that is due to my conscientious hand washing and gel squirting. It's a nuisance but it doesn't hurt - always a bonus, I think.

Arthritis affects everyone in different ways - sero-negative is an inflammatory and (I think I am right in saying) as such won't affect the bones but it does have a go at the joint linings and surrounding tissues. That is where the inflammation occurs and the pain is caused.

Injected meth should help with the nausea side. If it doesn't then ask the GP about anti-emetics. I think it comes down to choice: accept the nausea and enjoy the benefit of less arthrtitis or don't have the meth and feel considerably worse (as you are now) and perhaps cause greater long-term damage. It's a Hobson's Choice without a doubt, but from what you have said in your first post I think the meth was making a difference for you, and that is a god thing.

On the plus side you have recognised the symptoms - that is good awareness by you and at least you are not being as ostrich about it all. Explain as much as you can to the new lady what this disease is and how it affects you - if she has any questions relay them to us and we will answer as best we can, or you could both chat to the helpine. Arthritis has an impact not only on the one who has it but those around them too. We all find our personal strategies for managing and coping: I try to put as positive a spin on things as I can - as you might have realised - otherwise I would be utterly defeated by now.

I have one shot at life and God knows this version of a 'life' is so very far removed from the life I envisaged and want. Tough, yes?. Very very few people have the lives they want. From what you have told us I think the quality of yours will be improved by re-starting a med that you now know helped. I cannot tell you what to do - I am not a doc for a start! - but I do think you should go and talk to your GP or rheumatologist and find out what the options are - and ask about folic acid, that is usually prescribed alongside meth as I think it is meant to help diminish side effects as well as boost cell renewal. I think asking for more info and help is a step in the right direction. I wish you well. DD

martyn

Well seen the doctor - well the emergency doctor at the surgery
After some discussion and him looking at my records and I explained steriods worked last time he looked back at my records and it's been a year and 1/2
So I was given 100 steriod tablets - 6 then 5 then 4 then 2

Well I took the 6 at lunch time today - my hands have gone from being hit with hammers to a warm glow in 12 hours - it still feels kind of like magic

I have to go back in a month see how I am

but I could do without the joy ride of ups and downs

dreamdaisy

Steroids are brilliant: I have been on them for four years and am devoting this year to getting off them - even I am bothered by the long-term health implications (and that takes some doing). I am very disappointed to be doing this as they are the only meds that actually make me 'feel' better - I know it's a fake better but I don't give a damn about that.

I am much further down this route than you - I am about to start my 15th year. I have tried so many meds and not achieved too much. Never mind, I know what it's all about and I no longer care that much about it. You are still in the relatively early stages and the help is there: take it. Don't end up like me - fat, battle-scarred and weary, permanently on sticks. Life can, and should, be better for you. Take the chance to find out if it can be. DD

julie47

Morning martyn
Hope you slept well,,
How are you this morning? I hope the steroids have started to kick in...I have had the injection form of steroids on the odd occasion and tablets once. They do make you feel much better.

Have a good weekend
and take care,
Juliepf x

ironic

Hi Martyn,
How are things today? I hope the steroids give you the break you need. Have a wonderful and peaceful weekend.
Lv, Ix

dreamdaisy

How are you today, Martyn? DD

martyn

Well you did ask.
I feel like I'm being kicked when I'm down.

Started the Steroids Thursday - by Friday morning I could feel myself getting better things just ached but didn't hurt.

But I starting feeling sick - indigestion, heart burn,the runs - I thought it was the tablets - I think the steroids on Friday 'passed' right right through me, didn't have anything on Saturday (No food no tablets)
Saturday night my girlfriend starts being ill (So it's not the tablets then!)
Ate on Sunday night and took tablets late (Yes I know your mean't to do it every 24 hours but I'll slowly put that right)
I feel a bit better this morning - completely wiped out thou!

dreamdaisy

Oh dear, you are down with a lurgi then - it happens! Try not to take steroids at night - they are desgned to 'brighten' the system so sleeping thro it is a waste. They are best taken in the early morning so that the benefit can be felt thro the day, when you need that steady release of energy, for want of a better word - early morning is also the time that the body naturally produces its own version of the stuff! I hope the sickness etc is getting better - there are all sorts of things going around at the moment - keep up with the handwashing etc. I hope you are both much better soon. DD