I feel a bit guilty because i only come to this forum when I am feeling worse and then seek out advice from everyone here. I am wondering if anyone out there has found that they suddenly seem to deteriorate, movement, tiredness, ability to do things. I have been on Mtx for some years and started enbrel 6 months ago. At first The pain in my spine seemed to improve and the pain in my legs at night disappeared as did the terrible fatigue. However, my neck pain is returning and my neck is very stiff and I have very little energy. I seem to get so tired really easily, my body feels heavy and its an effort to move about some days. Does anyone else feel like this. It may just be a flare, or the damp weather here in the UK, but it is getting me down, I am just finding it hard to do anything. Sorry for moaning and feeling sorry for myself, but it doesn't help when people say, you look fine, doesn't look anything wrong with you! Even though I walk with a stick, have to wear orthotic shoes and struggle with my hands because of the joint damage already done before my treatment started, not to mention feet, back, knees and hip. Any advice or information would be very welcome. I do sometimes feel that I do not know enough about this disease and should be more well-informed. Any advice on reading material would be welcome too. Apologies again for moaning, it is reassuring that there are fellow sufferers out there who understand. thanks in advance.
You don't need to feel guilty, Tasha. That's what we're here for! I'm sure it's disappointing the mtx and Enbrel aren't working very well. Do you use heat and ice for pain at all? I found that the "neck buddy" which is heated in the microwave works well for my neck pain and an electric heating pad works well for my spine/SI pain. Ice packs work good for my foot pain. I know these just give temporary partial relief (depends on the degree of pain) but it's better than nothing. Hope things improve soon!
Hey, Tasha, if you can’t moan here, where can you moan?
This disease waxes and wanes, comes and goes (kind of like members, sorry, just had to throw that in 
independent of your treatment. Being on something proven to be effective is not going to mean that you won’t have bad spells. But if the bad spell lasts, you really do need to ask the rheumie. You might do better on some other mediction.
As far as learning goes, have you checked The Newbies’ Guide recently? There’s plenty there, and lots of links to other material as well. And then there is the book that I recommend under book reviews.
Hey, don’t disappear on us for so long! Stick around and join the conversation – misery loves company, as they say. And it’s not all misery either.
Tasha. I don't really have any advice for you, but I am so sorry you are feeling bad. I was on Mtx and Humira together for about 6 months, when it rather suddenly stopped helping as well. It is very disappointing when you think you have this PsA stuff "fixed", and it is short lived. I have just recently started my Remicade infusions, with second one next week. I am very hopeful this one will be the ticket for a good long while. Anyway, I hope it's just a temporary flare and you start to feel better soon. If not, keep hope, fortunately there are other meds out there that can help. And vent anytime - we all understand how frustrating it can be.
Fill your life with music and laughter! I’m a rocker from the Sixties.even when I hurt I play the air guitar. Comedy is the best pain reliever. Go to an indoor pool,get a floating device,and just drift. The last thing is meditation and body resonance. Try music that makes your body groove. Just remember we all deal with crap every day. Remember the song “Don’t worry, Be happy”!
Hi Tasha, I echo all the other responses that it's no problem to only come here when you need to.
It's been my experience that the better informed I am about the disease the better able I am to cope with the constantly changing landscape that having PsA is. Alot of my understanding has come from the information available here on LWPsA as well as the book Seenie refers to. There is also a sister book by the same authors written with medical professionals in mind, it's a little more of an indepth and challenging read for the non-medical lay person but I find the two together are an invaluable resource for such a small financial outlay. Let me know if you'd like a link to this second book.
It also helps to have an understanding of the UK treatment guidelines that are published by NICE because this helps to explain the structured step approach that our doctors take with our treatments .... and also empowers us to ask the big question "what's next?" when we're not doing so well any more with any one particular treatment. There is some info on the NICE guidelines in the Cuppa House group for UK members. I've had to ferret around in these guidelines quite a lot in order to advocate for myself and push for treatment so if you have any questions I'd be very happy to help if I can.
But to answer your question, yes I definitely feel like you do, sometimes more than others. It is perfectly normal. And the day I stop being upset and frustrated by comments from people about how well I look, will be the day I apply for my sainthood as I know I will, at that point, have transcended all negative human emotion and be deserving of that halo. In the meantime I take a deep breath and count to ten or twenty or thirty ...........
Hi Jules, thank you for your reply, you did make me laugh! It is great to know there are others like me who feel the same way as me! I am going to try and get the book Seenie recommended and i will read that first and then look for the one you mentioned. If I have any problems getting it I will let you know. Thanks for your help and advice. Feel better mentally, if not physically, after reading all your replies!
Jules said:
Hi Tasha, I echo all the other responses that it's no problem to only come here when you need to.
It's been my experience that the better informed I am about the disease the better able I am to cope with the constantly changing landscape that having PsA is. Alot of my understanding has come from the information available here on LWPsA as well as the book Seenie refers to. There is also a sister book by the same authors written with medical professionals in mind, it's a little more of an indepth and challenging read for the non-medical lay person but I find the two together are an invaluable resource for such a small financial outlay. Let me know if you'd like a link to this second book.
It also helps to have an understanding of the UK treatment guidelines that are published by NICE because this helps to explain the structured step approach that our doctors take with our treatments .... and also empowers us to ask the big question "what's next?" when we're not doing so well any more with any one particular treatment. There is some info on the NICE guidelines in the Cuppa House group for UK members. I've had to ferret around in these guidelines quite a lot in order to advocate for myself and push for treatment so if you have any questions I'd be very happy to help if I can.
But to answer your question, yes I definitely feel like you do, sometimes more than others. It is perfectly normal. And the day I stop being upset and frustrated by comments from people about how well I look, will be the day I apply for my sainthood as I know I will, at that point, have transcended all negative human emotion and be deserving of that halo. In the meantime I take a deep breath and count to ten or twenty or thirty ...........