Pain!!!

Oh no Karen!! Right before Christmas!!! You poor thing. Hope it doesnt last very long! Hopefully the Stelara will kick in quickly and you will start to see some benefits! Shall cross fingers for you. Merry Christmas xx

Hi Girls,  Feeling so much better!!! Pain in legs at night now not waking me!!! Have slept so well!! Being to recognize the old me again. Have had a great Christmas, with lots of help !!! Hope you have too.God Bless and take care XX 

Hi Karen! 

Woo hoo! So pleased that you are starting to feel better! What brilliant news! You must be over the moon! What an extra bonus to feel goo for Christmas too!

I made it through Christmas! ha ha. I did panic slightly before hand! All the family were amazing and took it in turns to help out. I had to lay down a few times and there was always someone on hand with a freshly filled hot water bottle! I didnt manage to sat up in the evenings, but slept right through until gone 9 in the morning (apart from Christmas eve when I was awake through most of the night with very painful and fidgity legs)!! My back is really painful today, so I obviously havent rested as much as I needed to. I still cant seem to walk very far. My boxing day stroll with the family was very short lived. At least I can relax now with my feet up!

I wish you an incredibly happy and healthy new year! I am crossing fingers that you continue to feel better!

x

Hi.

Just checking in to see how everyone is doing after Christmas? Happy New Year!

How is your Stelara going Sheila and Karen? Am hoping that you are both feeling the benefits of it. I have my doctor next week and am seeing my specialist nurse too! Hoping to get something done about my pain and fatigue. Looking forward to hearing how everyone is getting on x

Hi Lainey,

Happy New Year! Christmas was good thanks to the Pred. I've reduced from 10mg to 5mg and have had a rotten few days but today I feel great so far. I'm beginning to wonder if iI've become intolerant to alcohol. I've had a few glasses of wine and a couple of whiskies over the festive period, not much at all (when compared to my consumption in the past!!) . I had nothing to drink yesterday and as I said I feel great today. Is there a link or is it coincidence? Alcohol doesn't affect joints, or does it? I would welcome others opinions on this. I'm due to see my rheumy nurse next week but I really welcome the experience of fellow sufferers. Also due to start a programme of physio on Friday which I'm looking forward to. I've gained 6 or 7lbs whilst taking Pred or this could be due to eating chocolate, cakes etc plus the booze. Good to hear from you xx

Hello Sheila

Glad you had a good Christmas.

I have struggled to drink too! How strange. I used to love drinking lager or cider and have barely drunk for a while now. I managed 2 glasses of wine on Christmas day and the same boxing day. I tried lager last night and only managed 2 bottles! I woke this morning at some un-godly hour, with excrutiating pain in my hip! I am still on the Prednisolone, but am down to 1 a day now. I had heard about weight gain while on this, but I have lost weight! Dont know if its because of nausea though. Seem to feel sick a lot of the time. Dont know if its the methotrexate injections or the combination of pain killers I am on, causing it. 

Glad you have got appointment with physio. Mine did wonders with my neck! Am seeing mine tomorrow and am really hoping she can sort my back out!

Let me know how you get on. Take care x

Happy New Year, I really do not know what is going on. I have not been this bad. I promised myself that I would not complain about my condition, but this really is getting me down. Whether is my body getting use to the new treatment? Could be the weather? I have been off alcohol, but with the feative season I have had a few glasses of wine!! Maybe there is a link. Definitely no more wine, and see how things go!! xx 

Dear Karen,

I'm very sorry you are suffering so much. Sadly I cannot offer advice as I'm in the same boat as you. I understand completely when you say you are not going to complain about the disease, one really gets fed up of saying how unwell we feel and how much pain we are in. My hands and wrists are the worst, agony. I am waiting for my GP to telephone this morning, I emailed him asking for referral to the Royal National Hospital for Rheumatic Diseases in Bath. I have asked him to find out how much it is to go privately - does that show how desperate I am?? I don't even know where Bath is, I live in Cumbria. I will of course share any info with you. Please keep in touch, we started Stelara at the same time so I'm keen to hear how you are doing. Sorry I haven't been of much help, please believe me, you are not alone. I'm terrified that this is it for the rest of my life, however long that may be. It's overwhelming and leads me to bad thoughts like I don't want to be here. Thinking of you, much love, s xxx

Oh Bless!! If you can get a referral to Bath, I have heard great things!! Bath is in Wiltshire. I live in Somerset, and at the moment I am really happy with the care and support that I receive from the team at Yeovil Hospital.BUT I have always Bath in reserve  when I think that I need it!! And I will make sure that I get there. I am so sorry that you are feeling like me it does not help with coping with what we have to put up with. I have just taken nearly 3/4 hour to have a shower and get dressed as it so much pain this morning. I am sure that there is light at the end of the tunnel, it is just a b****y long one!! The sun is shinning and I was planning on going for short walk down the lane, but that will have to wait!!! Exhausted or what! Take care and thinking of you tooXX 

Hi Karen. I am so sorry that you are suffering so much. You have every right to complain and shouldn't apologise for it, especially to us. How long did they say that you would have to wait for the Stelara to kick in? This damp weather certainly can't be helping much. It is very hard to not let it get you down. I have been seeing a counsellor. He has been amazing and has really helped me get my head straight. He said that when you are told you have an illness like this, you need to grieve for your old self! He also said that I should never feel guilty or worry about feeling sad or angry about what's happened or the future. He said that 'sad' is an emotion that helps us heal mentally over change. That advice has really helped me. I am off to my physio now to see what she can do. I am in a lot of pain so am not looking forward to it. Please try to stay positive. I really hope that you start to improve quickly. Please let me know how you get on. Take care xxxx

Hi Lainey. Thank you so much for that xx Let me know how you get on wtith phsyio. xx

Hi again Karen,

I forgot say I was on top form yesterday, full of energy, hardly any pain. thats what so difficult, I can't make plans. Glad you're showered and dressed, I'm giving in and going back to bed. David has just told me one of the grandkids is coming (3), I love her dearly and don't want her to see me like this. I think I will scare her. Wish he had asked me 1st, men! How selfish do I sound? I'm not but I just can't be bothered, Granny Grump, that's me! Perhaps I will feel great tomorrow again. I probably don't help myself as on a good day I go a bit crazy running round doing things. Oh ladies, this is so hard! !

Bless, The unpredictablity of this disesase really messes me up!! It is so hard not to go mad on a good day, but I have learnt the hard way, pacing is the only way, but then I still get a bad day, but prehaps it is better than the day that I would of had????? I know what you mean. I love my grandaughters, a little older at 6 and 8, but I hate them seeing on an off day, as I always feel they only see Granny Grump, and I try and avoid that as much as possible, but really hard sometimes!! It is so hard !!!! xx 

Hi Sheila. Sorry that you are suffereing too. This disease is unpredictable and seriously unfair. Maybe, like I said to Karen, the Stelara will kick in soon. It wont hurt for your Grandchildren to know that Nan has a bad day sometimes. Children are very resiliant and they will learn to adapt to how much you can do. Entertaining children is tiring at times, before you have all the aches. pains and fatigue to deal with. Children are fab at making you feel better though! I too, am still struggling with pacing myself. I got signed off work again for another month this morning. I am disapointed, but realistically know that its for the best. I dont know what to do as I am supposed to start my new job this month! Karen - my physio was good but left me in more pain than when I started! Shall be doing nothing for the rest of the day now. I need to work on my core muscles. She said that because I have been wary of moving due to the pain, I have not kept up the strength in the muscles. Ths in turn is causing weakness, so the muscles hurt when used and this adds to the pain from the PsA. She has told me to start on this slowly and stop when it hurts too much. 

I feel very lucky to have found this forum and the lovely people on it. It makes a huge difference to be able to say how I feel and know that you all understand what its like. Its also good that everyone tries to keep everyone else positive! We will all get there. It might take a while, but the light is still shimmering at the end of that tunnel, we just havent quite reached it yet! Take Care x