Another Bad Night.

[mattcass]

How much more can a body take I am on far to many P/Killlers 2 Morphine based, Dihydrocodeine ect but at this stage I have no options the sleeping tablets and anti-depressant are having no effect either, The next move is increasing my Steroid level yet again they don't like you being on a higher level for any length of time, But when I phone or contact them during this really bad episode all I get is Increase them It will be for short period. And my answer will be you said that the last time. matt

[Jacki08]

So sorry you having such a bad time--- pain is awful at the best of times-"but in the middle of the night when you can't sleep it always seems to be worse

[Someonesmother]

Yep that horrid can't sleep in too much pain, got to get up at 6 for work, how many hours til then aghhh then get through the day, stumble in at 5 and collapse. I hate that merry go round. I can;t wait to take something that will stop it all or at least put pain to a level that doesn't keep me up most of the night. When do you think you will get in for biologics?

[mattcass in reply to Someonesmother]

I am contacting the Rheummy this morning I know I just got the go ahead for the biologic so they know themselves that I am going through a torrid time not long, I HOPE !!!

[Someonesmother in reply to mattcass]

I so hope you get in soon. I am booked in at the end of Feb not sure how much longer after that it takes. rest when you can, and try and hold on. It is worse when you know it ha been decided and you still have to wait. Good luck tomorrow

[Hidden in reply to Someonesmother]

End of feb? Someonesmother that seems like a long wait! What are they going to give you? Anti tnfs take up to 12 wks to kick I. But some people see results straight away. Hope that's you!

K x

[Someonesmother in reply to Hidden]

Nothing has worked in nearly 3 years so I can wait a bit longer. I have no idea what they will give me. He started me on Imuran a week ago as I have to try one more DMARD, so far my feet have been swelling up to almost twice their size so I am thinking this may not be good for me either. hahah I have been living hell for this long, so a few more months is not so long in the big scheme of things.

[Hidden in reply to Someonesmother]

Oh no! That sounds very uncomfortable. I hope whatever they have in store for you is the right drug this time! I was on all the Dmards then Enbrel, Infliximab, Humira before ritux sorted me out! Been on ritux nearly 8 years now. My fingers are crossed for you x x x

[Someonesmother in reply to Hidden]

It is getting harder and harder to turn up for work I can tell you. I am hoping something works that I don't have an adverse reaction to. We only get to try 5 here and if I fail them all I have no more options. So I am really hoping I can tolerate something that works.

[Hidden in reply to Someonesmother]

Are you in Canada? 5 drugs is not that many. How many are you up to now? Over here you only have to fail 2 Dmards including mtx to have a chance of getting anti tnfs. It must be so stressful having medical insurance and not knowing what is covered.

I wish you well x

[Someonesmother in reply to Hidden]

I am in Oz have to fail 3 DMARDS, then you only get 5 goes at biologics. Health insurance doesn't cover any of this you have to go as a public patient for biologics. I pay for all other drugs, close to $300 per month for RA, heart and GERD meds out of my wages.

[Hidden in reply to Someonesmother]

Good grieve. I only pay £10.40 a month for my prescription but we have the national health service thank goodness. Sorry I don't know why I thought you were in Canada?

[Someonesmother in reply to Hidden]

hahah I wish, the cost is subsidised but not by much. Don't be sorry, we don;t know where everyone comes from, part of the sharing and getting to know each other.

[Hidden in reply to Someonesmother]

Yeah that's true. It's freezing cold here in England, I bet it's lovely n warm where you are?

[Someonesmother in reply to Hidden]

Yes it has been about 30 Celsius here the last few days, sunny and warm. My sort of weather.

[NeonkittyUK in reply to Someonesmother]

So sorry SOM .. I know how that felt . .was me from 2011 to 2014. I hope you find the med which suits your body and turns things around. Hugs. NK xx

[Someonesmother in reply to NeonkittyUK]

Yeah it sucks but I am just putting one foot in front of the other and as long as I can keep working I will. That is getting very tough though after nearly 3 years of this I think my body is very tired.

[NeonkittyUK in reply to mattcass]

Hi Matt . sorry you re having a rough time of it. This waiting time is awful .. it sent me to my doc four times so depressed I was crying ... which was so unlike me and I don't know how I got there as every step was agony but he understood and supported me. He was on the brink of intervening with the hospital .. he had set a date to go mad with them if I had not received my date to start an anti-tnf, when I did get a date from HaH. There was a really awful breakdown of communication involving just about everyone delaying my start, so I know all this waiting and pain is horrible. If I had not kept pushing and phoning it would have been much longer. (My case was unfortunate or something like that!!!) and I am sure you will get on one much sooner! Thing is you will soon feel better when a biologic kicks in and does something for you and often they can be fast acting. Not always but I found one was immediate in relieving me and then got allergic Anyhow let us think of it as going to work wellvfor you very soon and these agonising times and so many painkillers will be a thing of the past. You find it hard to believe something will work for you when you have gone downhill with the RA/RD but it will improve. Did for me. Good Luck Matt. NK x

[Hidden]

You aren't alone. I haven't even been given morphine based drugs just on anti depressant and sleeping pills but still up most of the night with pain in feet and ankles, knees and lower back plus the constant burning pain in hands and feet that no one has yet accounted for. Hell isn't it. Sympathy is all I have to offer. Tx

[mattcass in reply to Hidden]

Go to your GP and tell him you are going through a torrid time and you need something in the Meds cabinet that might take the edge of it tell him the night is long enough without being in constant pain, Poor Indy getting dragged out all times during the night, Now she knows what it's like to go out when you don't want to. matt

[Hidden in reply to mattcass]

I'm assuming Indy is your dog Matt? Mine are a little fed up with me just now because I keep flapping my burning hands about at night to try and cool them down disturbing their sleep - even hobbled downstairs last Sunday morning at dawn to let them out and cool burning feet on the snow while they poddled about doing their business and looking baffled!

I emailed my GP to ask what to take - he said Naproxen max dose with tummy protectors avd failing that steroids. I'm not sure that mine is RA pain though - probably OA and other Neuro stuff. X

[NeonkittyUK in reply to Hidden]

Have you been on transdermal pain patches? Can't recall sorry if we discussed this Twitchy? They do help me a lot. I find now the RA inflammation has gone down and my ESR CRP low that Nurofen/anti-inflams and painkiller tablets do not seem to work for me. Only the Fentanyl patches seem to alleviate the OA pain. xx

[Hidden in reply to NeonkittyUK]

Thanks for that suggestion NK. It's actually the nerve pain that I need pain relief for - I can muddle along with the OA pain with the odd paracetamol and keeping moving. Naproxen works well for me at max dose but I can only take it for three or four days at most as I start to feel sick and bloat and blocked after that! However I am sure that the reason it works so well for the burning as well as stiffness is because I have an inflammatory process going on.

So I kicked ass yesterday with my GP by email and said I can't live like this anymore - feeling as if I've jumped in a scalding bath and can't get out 24/7 is unbearable. I told him about Erythromelalgia and he did email back admitting he hadn't heard of it but recalled "from his dim and distant past" reading about the synonymous Mitchell's Disease. He agrees it fits my symptoms and says we will discuss Asprin when I see him on Friday.

I wrote back saying that I don't mind trying Asprin but I am really wanting him and my consultants to acknowledge the burning as part of my RA now. I'm really wanting to start a new DMARD, specifically Mycophenolate, which three Lupus friends take and swear by for symptoms very much like my own. I've said this is what I want to discuss with him on Friday - not just Asprin!! X

[Hidden in reply to Hidden]

How did it go on Friday Twitchy? With the gp?

[Hidden in reply to Hidden]

Thanks but it's this coming Friday Kiki - I'm juggling prescribed pain drugs and making notes so I can show him then. Naproxen is my wonder drug for the burning pain but I'm feeling sick and bloated after three days on max dose and think it's clashing with the Duloxetine and Zopiclone! X

[NeonkittyUK in reply to Hidden]

Hoping for a "result" for you very soon. That something will work and relieve your bod. xxx

[miss]

Soooo sorry your having to suffer Matt. Hope thw tnf comes quickly for you xx

[mattcass in reply to miss]

Me Too Miss Me Too.

[Sunflower62]

So sorry you having a bad time can you up the sleeping tablets maybe.

Worse at night so might be going down that road. Do you live in a damp area maybe near the sea? I stayed with my parents a few weeks ago they live near the sea in a bungalow my pain was 100% worse. Could you afford a holiday to the sunshine?

[mattcass in reply to Sunflower62]

the minute the treatment starts and I get the go ahead, OLA !!!

[Beverley-NRAS in reply to mattcass]

Fingers crossed then for a quick implementation of the TNFs mattcass.

Beverley

[mattcass in reply to Beverley-NRAS]

Thanks Bev. matt

[cathie]

Matt, it sounds dreadful, I'm so sorry. I 've had insomnia and have tried the classic things - often going to bed late helps, not sleeping more than 20 mins in day, listening to v soft radio with voices, all that kind of thing. All I can really do is send you cyber hugs and hope you get somewhere with all this soon.

XC

[Hidden]

Hi matt cass

Sorry to hear you have had another bad night. Hope they hurry up and get you in soon for your new meds? Have they said what you are going to get?

[Spooky]

So sorry to hear that you're suffering so much right now Matt and not being able to sleep is awful, it wears you down and we all need our sleep it's important that we do. get as much rest as possible, I hope it does ease for you soon. Sx

[hatshepsut]

So sorry you're going through this. I had a few months last year like this, the things that saved my life. ...literally. .. were a small dose (10mg) of amitriptyline 1 to 2 hours before bed, and zopiclone at bedtime (+ max dose of painkillers)

The relief was unbelievable when I finally managed 4 hours unbroken sleep.

Hope you get there soon. M x

[allanah]

With you on this Matt, is it maybe worth tho adjusting your steroid dose as they suggest as it can take a wee while to get the biologicals into your system.

Hoping today is a better day for you x

[adycol]

I know the pain i worked with it for 4 years until i almost gave up nothing seemed to work for me like you i was on high doses of metho prednis sulph amtrip then finaly i got eterncept and 80% of my life back but you must keep your chin up and don't give in hope this help good luck