Pain!!!

Hi

When I went to town to shop, I set the alarm on my phone to stop myself from being tempted to overdo it! Im glad I did. I am trying to get out each day, just to get out of the house and to get some fresh air. Pacing is impossible and it is a battle! I normally stop when the pain in my back is making me feel sick! Probably still leaving it a little too late!!! I was started on Prednisolone (4 a day) back in November and am on them until January, getting the dose reduced every 2 weeks. I wonder if that has contributed to me feeling a bit better over the last few days! It might be a combination of them and the methotrexate injections. I was put on the same steroids back in June. They didnt do anything that time (apart from give me heart palpatations)! Hopefully if you start your new meds on the 20th, the steroids will be in your system for long enough to tide you over! Have you tried methotrexate? So many people say it doesnt work! 

Hi Lainey,

methotrexate was my 1st DMARD in summer 2013 - led to methotrexate induced hepatitis, no fun at all 😨

Ooh! Thats not good! Shall cross fingers that the new one works for you instead! x

How horrible to get headaches. I was taken off co-codamol as they did the same. I havent suffered with prednisolone thankfully. Its not long until you can start the stelara, although it must feel like forever! Am hoping that my meds will be working for Christams too! Its hard isnt it. I want to be positive, but you have that nagging doubt in the back of your mind, that all the pain and hideous fatigue will return and I will spend Christmas laying in bed! I am crossing fingers for you and really hope you get some relief xx

 

It sounds like you have had an awful experience! Im so sorry. Like you say, its mentally, just as much as physically that we seem to suffer! Stress definately seems to make it worse. I cant believe they declined your application! I have looked into getting any form of help on numerous occasions and am not eligible for anything. Like you, I have worked really hard all my life and havent ever taken off the state, yet paying all that money in, doesnt seem to win you any luck getting something back! I do work for the public sector. Part of me is so keen to get back to work, but the other part of me is terrified that I will get poorly again and go back to square one! Its easier to pace yourself at home with no responsibility (apart from my own 2 chidren and husband) and deadlines, than it is at work! Do you mind me asking how restricting your life has become, since being diagnosed? Are you able to do much? xxx

Sheila, I am so sorry that you have all this stress. You really don't need it!! Lets hope that the pension provider comes to their senses.It is so tough to have to go through all of it . It took six months for mine to be finalized!! I sent so much evidence from different health professionals to my line manager( as she was responsible for the gathering of evidence) she was unindated!!! Take Care. Fingers crossed X

Hello. I was wondering if you or Sheila had experienced any leg pain and numbness with your PsA? The pain in my lower back has been awful, even with all the pain relief. I am also tripping myself up and having strange sensations down both legs. They almost feel too heavy to move at times and it feels like I am not lifting my legs high enough when I walk. The pain also intensifies when I have to stand for a short amount of time! I thought that the pain was meant to ease when you werent sitting down. Walking is causing pain in my lower back too! I went to see my doctor and she said she is referring me for an MRI. I dont know how long I will need to wait and the pain is so annoying! Hope you are both doing OK xx

Hi Lainey,

I get pins and needles a lot in lower legs, strange. I too have considerable pain in the lumber area. Glad you are going for MRI, it may be ankylosing spondylitis (spell check?). The scan will provide answers.

hey, my 2nd appeal failed! I too provided a thick file of evidence. A well known national health care provider has produced conflicting reports, known in legal parlance as a perverse judgement so it's now gone to the lawyers. No one can believe it. It would make a good comedy if it wasn't so tragic! Onwards and upwards! Take care xx

Oh no!! What a nightmare! You poor thing. This really cant be making you feel any better! Is it going to cost you a lot of money to sort out? I'm so sorry you are having to deal with all of this while being so unwell. 

Thank you for your answer. The consultant had queried AS (not going to attempt to spell that) ha ha. I tested positive for HLA-B27, which is linked to it and I have suffered with stiffness and pain in the lumber region that improves with moving every morning for over a year now! I had a panic when the numbness and clumsiness started to get worse. I googled, which is never a good idea is it! It came up with a scary complication that you can get! Im sorry that you get pins and needles, but you have reassured me. Thank you xxx

Hi again Lainey,

glad to be of some help, do let me know if it's AS.

my solicitor believes I have a pretty strong case for medical negligence against the well known health care provider but in these cases the onus is on me to prove that and the costs must be paid for upfront so I'm going to check my household insurance and hope I ticked the appropriate box or I can go to the bank of mum and dad (I'm 51, this is nuts). Alternatively I could contact one of these no claim,no fee firms that are always advertised on TV.

2 years of my life have been consumed by this, it's so very hard particularly since I had pneumonia in April, it's such a struggle. I've had my delivery of Stelara but no contact yet from the nursing team who administer it. Thank goodness for Prednisolone! I wonder how Karen is doing, she's due to start Stelara tomorrow. All the best

I am 45 and stil go to the bank of Mum! ha ha. I really hope that it works out for you. It sounds like you have a strong case. Definately worth checking your insurance. How much money do the no win no fee people take from you? I have often wondred if they are any good. Pneumonia must have been horrible. Did you get that because the meds you were on reduced your immune system? I cant believe that I havent caught my daughter and Mums awful coughs and colds to be honest with you! 

How frustrating to have the Stelara, but cant use it! I am still on my Prednisolone. My nurse has increased my methotrexate dose too. I am waiting for that to be delivered.

 spoke too soon the other week, about feeling better and felt awful for days and ended up pretty much unable to move. That will teach me! ha ha. My body feels so heavy! I have so much that I want to do though. I have an interview this morning for the clerk to Goveners job. I am really excited about it. Its so nice to get ready to go out and put on make up and a decent outfit!!! ha ha. 

I hope Karen is Ok too! Hopefully we will hear from her. Take care x

Hi, Lainey and Sheila Stelara delivery due tomorrow. Have not heard from nursing team, but have spoken to GP Practice they will support administering as they have done before. I had a faulty autoinjector, a little while ago,  so no injection that month after which I became nervous about using it. I was just getting back into it when that particular treatment was stopped!! Leg pain feet pain and hands OMG I have been awake most of the night and what with night sweats, feel totally washed out to day. Panto with granddaughters on Saturday so definitely need to be feeling better. Shelia I do hope that you get things sorted. Take care

Hi

So sorry that you are in so much pain! I really hope you feel better in time for the panto! Cross fingers you will see the benefits of your new meds quickly. 

I woke this morning feeling very positive. I then realised that I also felt well last Thursday! I have my methotrexate on a Monday evening and am wondering if thats related in some way! I dont know if it peaks or wears off after a caertain time. Last weekend I felt awful, so I will have to see what happens this weekend! I find out about my job this evening! Thats keeping me going at the moment. I hope that you both see some quick improvement. Take care xx

Thank you so much. Good Luck with the interview. I have just heard from the nurse, after a little "presuasion" she is coming on Monday morning, rather than after Christmas. That was interesting regarding Methotrexate,I take mine Saturday, and have noticed that Tuesdays seem a little better than the rest of the week. Coincidence??? Take Care XX