It's so interesting the journey leading to being seen and diagnosed by rhuemotolgy. I suffered for months whilst attending gp who treated me with steroids, anti inflammatories and various painkillers before an urgent referral was sent to rheumy. I waited the best part of a year before actually seeing him but once I had, within a space of 3 weeks I had numerous tests, MRI etc and was diagnosed with ankylosing spondylitis and peripheral RA.
Unfortunately , the disease is very aggressive and in the past 1.5 years, I've had both hips replaced, both knees replaced and operations on feet. I'm currently on my 2 nd biologic and on 20 mg of mtx as well as various pain killers but nothing seems to be slowing it down. There is now talk of my elbows needing replaced and possibility of operation on spine!
I have 3 kids still at home , the youngest being ten.
How do people keep going in the face of such an unforgiving disease and stay positive and optimistic re the future??
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Eiram50
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Decide what is important to you and set objectives. Clearly, getting effective treatment is a key. For me it was Humira injectons and I'd be lost without it I think.
Thank you for your reply. It's a difficult One isn't it? I work full time ( social worker) and with the 3 kids, I'm finding it difficult to pace myself? I'm normally a positive and very resilient person but struggle with the constant fatigue and pain. More than that though, is the not knowing if and when it will be more readily controlled and that things will get better?
I guess I must just be feeling sorry for myself a bit today - still, tomorrow's another day. Thank you again.
Cricket...I'm not surprised you are struggling!! You have my admiration in continuing with work, and such a difficult job!
I was in a very similar role to you, working with young parents with complex needs. Best thing that ever happened to me was being made redundant! Though at the time I was devastated.
For me the lack of intense work stress has made things better. Any chance you could slow down on the work front?
If you are not on a biological treatment already, I would press your rheumatologist for one of these. They can be life-transforming as I was lucky enough to find out. I returned to my sport and still participate eight years after diagnosis. See my thread re. inspirational, perhaps? to describe my situation. The short version is that my rheumatologist said that I had proved that there is still life after diagnosis.
Nettie, I have thought of reducing my hours, it would most likely help but the other part of me loves my work and wants to continue as long as I can, as I am - it may be the decision will be taken out of my hands soon enough; time will tell . I will definitely give it more though though as I am fully aware the stress of the work, alongside the pace and heavy case loads likely exarcerbates things.
Hawker, this is the second biologic I am on (etanacerp) and I think they help a little re the inflammation but not hugely and I am about to come off this and try my third! I look forward to reading about your journey ; thank you both for your kind words, it helps to hear about others experiences and management of their conditions.
I failed on both Humira and Enbrel, it might be the anti tnf doesn't work for you. After failing on Humira and having my worst flare since diagnosis I was charged to tocilizumab which attacks the IL6 protein instead. Like some sort of miracle just 24 hours after my first injection I started to feel the benefits, walking because easier as the inflammation in my knees went down. That was in the May half term by mid June I was back working as a Reception Teacher on reduced hours. I was back at work full time before we broke up in the July. Sometimes it is just a case of finding the right medication for you. X
Thank you Ruth, that's really great to hear. I have realised now that it is trial and error and about Identifying the right combination of drugs - it varies widely, doesn't it? It's not a one fits all thing.
I see the gp this week so may have a chat with him and see my consultant earlier than agreed to discuss further.
Thanks again, everyone and I wish you all a pain free, energy filled Christmas!
I'm sorry it's so aggressive with you. I have it and the pain just slaps me down. I take care of my elderly handing caped dad also. With minimal help . People are busy and grew tired of me complaining so it's better to just hide from me. Oh well. I'm not coping. It took my career away and my social life and my active outdoor life. I hiked and kayaked. So now it's reading and little things. And now my eyes are giving me trouble. I told my doctor it wants everything , please let me have something , my eyes I beg you RA LET ME HAVE THOSE ..I am so sorry for you and the love for yoir children. If you r accept I'll pray for you and a cure. I haven't had anything replaced but I no my bones are in pain and being destroyed. Good luck and I hope we get a cure soon. Rest and I hope you have help. I'm here to listen
I am really sorry to hear how difficult your life has now become- it is a challenge, for sure. I'm not sure where you're located, it as a social worker ( albeit children and families), I would've thought you'd be entitled to a carers assessment and then able access services and support to enable you to care for your dad, and yourself? Have you contacted your local adult social services
I'm afraid I haven't a recipe on how to cope for you. The way I look at it is that there is just no other way than to stay positive because any other way leads to a downturn in everything. The condition, relationships, our feeling of self worth and being alive. We just have to fight on, in the end it will make or break us but there is no choice. All the very best.
As a rule I am positive and on reflecting more, I am Beginning to realise one of the hardest things for me is feeling a lack of control over things? I'll get there, I'm sure .
I am in awe of what you have been through but more especially of your extraordinary resilience and positive spirit which shines through your post. I really hope you find the right combination of drugs. It sounds like you are seeing a good rheumatologist - even if your wait to see him was unconscionable!
I have AS and peripheral inflammatory arthritis - but absolutely nowhere near as bad as yours - and the only advice I have is to try hydrotherapy. I go once a week to a session organised by NASS for AS sufferers and supervised by hospital physios. It's a brilliant way to exercise - and really nice to be with other people, of all ages and from all walks of life, who are going through the same thing.
Dhall54, thank you for to he kind words. Exercise, I know is an area wherein I could IMotive upon. I never stop moving with the kids and work but I'm very aware, it's not the "proper" exercise I need. I'm seeing gp so may ask him about hydrotherapy and hopefully this will be a positive move.
Thanks to everyone for contributing, it's so easy to imagine no one has pain as you do and that you're quite alone in it all - so good to know we are not!
You don't need to go through your gp. If you have a NASS (National Anylosing Spondylitis Soc) group near you it's organised through them. Well worth joining NASS anyway for the AS part of your condition. Very important to keep the spine mobilised as I'm sure you know!
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