Pain!!!

Hi Sheila

Thank you for that reply. I didnt know that about inflammatory markers! I thought there must have been a mistake. I am slowly coming to terms with all of the changes that are going to have to take place. I will be taking on a new role with work as I cant manage the job I was doing anymore. Cross fingers I can start that after Xmas. I hope that you are keeping well and that you are starting to see some improvement. Thank you again x

Hi Lucy,

would you pm me with details of rosehip, please? Also, your experience of other alternative meds/treatments you may have tried. I'm getting very tired (desparate) of waiting for improvements. Thank you, Sheila

Hi Lucy

Thank you. I have just googled the rosehip capsules. There are lots of reviews on the Boots website on this and they are all really positive! I will mention this along with the amitrytiline to my nurse when I speak to her next. Glad you have found something that works! Thanks again. Best wishes x

my pleasure - if you find any particular information helpful, please click the vote button, so that I know which information to share again.

Hi Karen,

I take low dose amitryptline at nights and it sure does help. I'm rarely awoken by the dreaded pain and inability to move my legs. Certainly much more comfortable.

Hi Karen

Thank you for your reply. Sorry that you still get such horrible pain. Without getting ahead of myself, I think that my injections may be starting to do something!! I am trying to not get excited, just in case I am only experiencing a couple of better days!! My back is still hurting, which really gets me down. I am walking around like a pensioner and having trouble standing for long periods of time. Am seeing my physio this morning, so am hopeful that she can help me. What I find hard is that when I have a couple of good days, I get all the things that I need to do in my head and plan way too much! I have always been such a busy person and have never sat around and its so tricky to not overdo it! I managed to get to my local shopping centre yesterday on my own and people must have thought I was mad. I was grinning (inbetween doing my breathing excersises to control the pain) and dodgering aroung very slowly, but so happy to be out! ha ha. Am tired today and aching, but not too bad and it was worth it. It is awful that you still get the pain and I am disapointed as I was hoping that would go. I cant believe that the pain gets through the crazy cocktail of drugs that I am taking. I want to get back to work after Christmas and am crossing everything that its possible! Would love to hear from anyone that still manages to hold down a job and if so, how do they find it? I really hope your new treatment helps you Karen xx

Hi Lainey, It could of been me writing that, as that is exactly how I am!!!

I drove to town yesterday with the plan to do some Christmas shopping, as did not feel too bad. Time I had driven 20miles, I only managed one shop for one pre ordered item. So glad to get back in the car and drove home, Totally washed out all afternoon!!!! Really tired today!!! I have also always been busy,  I went off sick in November 2014, and ended up in taking Ill Health Retirement in September this year, there was no way that I would of being able to return to a very demanding job that I loved.(supporting Adults with Learing Difficulties into paid emplyment) I feel so isolated some days!!! So really looking forward to the new treatment, which hopefully will give me my old life back. I really hope that you are able  to get back to work! Let me know X

Bless you! What is Ill health retirement? What a shame that you couldnt go back to a job that you loved. Do you get bored at home or do you manage to keep occupied? I work with children with behavioural and complex needs in a school. You are right about it being a job that is too demanding for someone with this anoying diagnosis! I have been racking my brains, trying to think of other ways to suplement my wages! I am on full sick pay at the moment, but know that when (and if) I go back to work, my hours will be significanlty reduced. I really hope your treatment gets sorted! x

Hi, Ill Health Retirement,although I was planing to return to work, I worked for  local goverment. Following a meeting with my manager and HR,it was felt that my condition was not well controlled, and my GP had already stated that I was not well enough to return to work. So HR arranged through OH ( an independent company)for various appointments, to begin with by telephone then I had to have an medical assessment arranged with a consultant that worked for OH,she made it clear that I was not fit for work. OH then contact my consultant and generally gathered medical evidence, which then went to  panel and it was agreed that I qualified for retirement, although I am below normal retirement age. I should say that I also have Osteoarthritis. I get really bored some days!!! But make the most of my day doing the things that I want to do!!! My husband is self employed so is home by 17.00, and some days works from home. If this new treatment goes really well and I can return to work, I have been told that there will be some hours at my old job, but it involved alot of traveling  and some of my week was spent at a hospital as Job Developer for Project search. I think it is unlikely that I will take that offer up.I have thought about Exam Invigilator, and supporting students who have problems with reading and understandig exam papers. BUT will have to wait and see how things go in 2016. You obviously are in a very demanding job too. Take CareX

Hi karen

Its good that you managed to get your retirement agreed, but such a shame that it came to that! Both you and Sheila sound like you are unfortunately, struggling a lot more than me. It sounds like you worked for a company that really appreciated you. Demanding jobs and PsA, do not go together, do they!. I am considering a job as a clerk to govenors as a local school. You need to attend meetings (average of once a month) and then write the minutes (can be done at home) and organise following meetings. It is averaging out 3 hours a week and the money isnt too bad. Once you have got the job a lot of people do the same role at various other schools. its a good way to make money, socialise and work from home. I think I am still too tired to care about being bored at the moment. Like we said, I go out and then am desperate to come back home and sit down! I was so hopeful that I would be energetic today, but have obviously over done it again. ha ha. Managed to pop out to a couple of local shops and am very tempted to nod off now! The more time goes on, the more I am doubting being able to go back to working in a busy school full of 4 to 7 years olds! xxx

Clerk to the governors sounds like an excellent idea. I have a pal who is clerk to the parish council, actually 3 separate ones, he loves it and it's interesting and varied without being overly demanding. I would like something along those lines, once I've started Stelara and I get my life back. It has to work!

Its definately something to think about isnt it. Its good to have a goal to aim for! I really hope the Stelara works for you! Please let me know how you get on x