Am in agony

Good morning,haven't been on for a while. I have just returned from Cornwall after having a lovely week away with my hubby. I struggled the whole week i was away though i kept going with pain meds as much as i could. We got back yesterday and though i slept very well(nothing like your own bed for a good nights sleep) i am in absolute agony today. My back,neck,hand and eyes are all giving me a hard time. Yes i am feeling very sorry for myself this morning.

Back in the summer i was taken of Sulphasalazine and just the other week i had to go back onto it as i was in agony. Though i am back on it,t is taking its time to get through my system. My consultant wanted me managed by just using Mtx which clearly hasn't worked. So now i have to suffer until it kicks in again.

It was warmer in Cornwall than it is here in the Midlands as well. It was a lovely warm week down there. I am now feeling the post effects of a lovely holiday and today i am feeling very sorry for myself. Tomorrow i will get onto my rheumy nurse and see what she can do for me.

Hugs to anyone who needs one.xxx

27 Replies

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  • Hello lovely Sylvie, missed you on here for a while. Glad you had a lovely holiday and I hope you got the good weather they had in the south recently, unfortunately us northerners have just had fog and sea fret for ages now!!

    Sorry you are sore darling, and you know the drill from all your experience! Rest up, painkillers and loads of hugs from your lovely hubby. Sending hugs xx A

  • The weather was absolutely gorgeous Allanah, it was like summer down there and we got out and about everyday. The weather kept us outdoors all the time.It was too nice to be indoors. I am paying for it now though and yes i know what to do chuck the pain killers down the old throat every four hours and i have heat on my back and gloves on my hands and have my feet up. Hope your okay darling.xxx

  • Not too good babes. My daughter is pretty ill with kidney infection. So my body decides that when I need to be busy helping to flare. I missed my last infusion due to flu so can't wait on Tuesday as it's a month since my last one. !! Starting radiotherapy on 1, 8 and them 15 October for the lumps so hoping that will help . Otherwise ok lol!! Take care x

  • You seem to having a hard time of it yourself as well hugs my darling.xxx

  • Hi Sylvi - we went to Cornwall last summer and it was amazing weather wise. Poor you for the backlash - seem to be having one of those myself after doing too much a few weeks ago. What happened to the anti-tnfs you were trying? Did things not work out re side effects? I really hope the Sulfa kicks in again soon for you. X

  • I had a chest infection and they took me straight of it.xx

  • Oh that's rubbish for you. I guess they couldn't risk trying you on another then? Lots of sympathy. x

  • Thanks very much and yes Cornwal was lovely and i saw a kingfisher in the wild for the very first time.xxx

  • Oh how lovely - I don't think I've ever seen one but we did see an otter the other day! Txx

  • Hi Sylvie, nice to see you back on the site again.

    I had a lovely holiday in Boscastle, pre floods and it was so beautiful all around that area. I remember climbing with my children up to Tintagel! No way I could do that now!!!

    Sorry you're still in so much pain though hugs back at you.xxxxx

  • Good to see your name back on here again, sorry to hear your not so good, especially after a week away. xx

  • I never left ladies i suppose you could say i was sulking for being told of like a child because my words were mis-interpreted. I missed you ladies as well.Hugs to you all.

    Boscastle hasn't changed at all it is still lovely. I can't say the same for Tintagel as it is so many shops selling gifts. I couldn't get up to the castle as there was too many steps up to it. There is the old post office where i was in heaven,it was a lovely calm place to be and i took loads of photos only i can't post them on here as my pictures are to big.xxxx

  • Hi sylvi,lovely to have you back. Cornwall is a fantastic part of the world isn't it. Boscastle is one of my top favourite places, just love it.

    Hope your feeling better today. Welcome back x

  • I am feeling brighter thank you darling. I really like Boscastle and it wasn't spoilt when they rebuilt it after the floods.xxx

  • No,it looks exactly the same doesn't it. Wish I was there right now. I'm now living on the east coast of Suffolk & we've had fantastic weather here,although quite pretty Boscastle it isn't x

  • The weather was lovely while we was down there. Where in Suffolk do you live,i was born in Ely Cambridgeshire. So i know the area fairly well.xxx

  • Ely is lovely to in a different way. We are going to Cambridgeshire for the weekend, we have friends who live in a little village there.

    I live near a place called Snape. X

  • I believe it is the other side of Cambridge to Ely.xxx

  • Glad you enjoyed Cornwall .. I was there too in St Agnes/area for the heatwave week 5-12/9 and it was fab despite ten hour car journey back with one small break. So many traffic jams/roadworks. I wonder if a long journey has trapped any nerves or similar for you? I started with sciatica once home and my ankles were rigid too but probably too much walking on holiday also.

  • My back was bad before i went as i have worn discs and joints to start with. I am exhausted even now and i am being told there is no more drugs they can give me as i am on them all. I wish there was something that would take it all away. Hugs. xxx

  • Aww I am so sorry, Sylvi .. my back is just bout the only good part of me .. everything else has lost the plot! Hope you enjoyed your Cornwall hol as much as I did. Where did you stay? I do recall you had a lot of failed meds but have you tried the infusions? I was thinking I had tried Sulpha, Mtx on its own, Arava and Enbrel and Humira and thought ... nothing will help ... but Rituximab is doing something but still could do more. It may be this is as good as it gets and manage it with physio and pain killers. Gentle hugs to you. xxxx

  • We stayed at Widemouth Bay just outside Bude. We had a lovely time,we went to Hartland abbey and gardens,Bideford,Boscastle,Tintagel and Tamar otter centre also we spent time in Bude and walked along the canal as well. Our caravan was very nice,we had a lovely shower and two toilets. Where did you stay when you went down there?

    They gave me some anti-tnf last year and i had one dose and i had a chest infection and i got taken of it pronto. I just wish they would they would listen to me. Hugs back at you.xxx

  • We were in a cottage bungalow in St Agnes near Perranporth. It is a bit further down from where you were , past Newquay and not as far as St Ives but we went to St. Ives too. Been all round Tintagel and Bude area and touring round doing B&B many years ago. It is lovely most places. Sorry to hear you had a reaction on an anti-TNF but there are many biologics they could try you with? I did not suit Enbrel or Humira. Reacted to Enbrel on the injection site and it stopped working after five lots and Humira did nothing. When is your next review? You can't be left with nothing Sylvi . Have been there when waiting to start Enbrel and there was a delay. I wish they would listen to you, Sylvi . .now!! It is soul destroying when you get bedbound ... housebound ... immobile, so hope they can see you soon in clinic and make some decision with you as to what to do now. Hugs. xxx

  • Sulphasalazine does take a while to kick in I know :-( xxx

  • We have been to St Ives before,but it was after the bad weather a couple of years ago and the site was very damp as we were in the woods. I have a friend down there so we will be seeing her and there was a pub we used for food and we became friends with them,but they have moved on,but i have one of them on f/book so we will look her up as well.

    My bloods don't show enough problems to go onto anti-tnfs so it is not in my future. I wonder at times if i am as ill as i feel, because it all comes down to the bloods with my rheumy team. I am slightly anaenmic so i will have to eat more liver. I will see the chemist and see what is available on the health counter.

    Hugs to you all and thank you for answering me.xxxx

  • Sylvi .. a pleasure to speak with you always. xx You are obviously in great pain and have mobility problems so they should ensure you are on effective medication to alleviate all this. I know though there is strict criteria for being eligible for biologics. I was anaemic for many years with the RA way out of control. Green vegetables and lots of iron rich berries/fruits boost my red blood count as I don't really eat that much red meat at all. More a fish and turkey/chicken person. When is your next review? I wish you all the luck in the world and so wish you could feel better very soon. We had a lovely bungalow cottage in St Agnes, for four but got it for the two of us at no extra cost. It was so close to all the lovely beaches .. many accessible by car parks close to them and some on level access too. It was an ideal week and a heatwave .. perfect weather perfect holiday. xxx

  • Pleased you had a good time silvi & good weather too. Not so pleased for you though with the sulfasalazine taking it's time to work. I hope your Rheumy nurse has been able to help & you start feeling at least a little better soon.

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