help/advice on pain management

Hi Lisa what is the prednisone? I'm currently on methotraxte and I'm still in a lot of pain.

Oh Wendy

Me too today 😥😥

Prednisone is a steroid taken orally. People don't like taking steroids as they immediately see weight gain and hairs on their chest 😂😂😂😂

That's the great thing about the prednisone.... I assure you I have neither of the above symptoms!!

To whack you on say 30mg is like jump starting your body. It certainly worked for me. They then reduce quite quickly to 20mg 15mg and so on until you are down to 5mg where they decrease by 1mg slowly. It's like the injections people have. It's an immediate target to the swelling, inflammation and pain. Might've worth discussing with your doctor.

In the meanwhile I am sending you some positive vibes and much love and hope your pain starts to ease as soon as possible 😊☀️☀️ X

Hi Lisa,

thank you. I think you are correct about needing a kick start. I'm getting very low in mood/energy /will to live. I was in a similar position in November and rheumy has me on a larger dose for 4 weeks, reducing as you say to the current 7.5mg maintenance dose. That was my introduction to Pred and it really did pull me up, I felt better within 48hrs. I wonder if you build tolerance to steroids like you can with painkillers etc?? The pain is so bad that I feel nauseous so I've no appetite =no energy so that's where I'm at, spiralling downwards. I promised myself I wouldn't get so low again but it seems to be happening. I see my consultant on Tues so iit's only 5 days. Thank you for your message and thanks to all, the feeling of isolation reduces when people respond and I'm grateful for this forum.

Sheila we have all been there and I know how desperately low you feel. It is perfectly natural to feel like that but remember it does pass. 5 days when you feel like you do is a long time. Perhaps you could phone in the meanwhile or see your doctor to get the prednisone as soon as possible. It will help with your mood as well 😊😊 I don't know about them stopping working after a while but you are not going to be on 30mg for long..maybe when you wean down you could keep it at 10 mg for a while and see if that helps. I reduced from 30 to 10 and stayed there for quite a while before reducing. I am now down to 2.5 mg but boy do I notice it if I try to go lower so that seems like the correct dose for me. Everybody is so different with what they need. The good thing is doctors are all for doing as I've suggested above because it does work.

You don't say how long you've been on MTX but if it's under 6 months it may not be working to its full effect yet.

Allow yourself to cry, scream, stay in your pjs and watch silly films and eat ice cream 😊 There will come the day that you get up and this awful time has passed. In the meanwhile be good to yourself. Don't try to do too much and rest. I so hope they will do the prednisone for you (if that's what you chose) and that it works. Like you said you did it before and within 48 hours you were 'kick started'

Much love and you are in my thoughts today 😊😊☀️

Lisa

X

Lisa thank you.  I am still new at all this and I am so unsure what to feel any more.  I am going threw something right now that I dont like at all.  My doctor took me off of excersizing.  I am confused by that because at first it did seem to help.  About the past month is when I started feeling sick when I did excersize.  After I would have to take a pain pill just to move.  I am so confused on how I should treat myself.  I am so used to doing for others and not complaining about my pain.  Now it seems I have turned into a whin bag and I feel like a broken record.  I cry at the drop of an hat now.  It hurts to pick things up, it hurts to move my shoulders and kneck.  I get to feeling good in one section and then another startes.  I just dont know what to feel.  People do look at you funny because you look ok but your in pain and they dont get it.  Thank you so much for your encouragement.  It has helped.

Dear Wendy

Oh I just want to give you a hug!

Ok let's start with 'being new to this'. Obviously I don't know how long you have been on MTX or other medications so all I can do is give you my best advice of what suits me. We find out how to 'cope' with this all by trial and error. Everybody is different. As for sounding like a broken record and feeling you are moaning all the time, I think that of myself sometimes. People who love you and are worth being in your life should understand. You're right you can't see pain.... You can't see stupidity either but they are both very real things 🙊🙊😂 (just trying to make you smile). Again try and start from the beginning. You have a chronic disease with vile treatment. You have every right to moan and it took me a long time to learn to ask for help and then to actually let people help me. I too like helping people and you can still do that in many ways when you feel better. So from the beginning turn things around. Focus on things you have done. Things as simple as 'did you get out of bed this morning?'.... Some days when we are bad that is a huge thing to do. All the little simple things, cleaning your teeth, making a cuppa, pat yourself on the back for. I know it sounds crazy but these are very real things that we do and should be proud of. Anything you do over and above these things (did some laundry?) be proud. My doctor told me I wouldn't be able to get out of bed some days so when I'm really bad I literally do the above. Praise myself for what I can do, not what I can't.

Again not knowing your medication it could be that it's not had time to be fully active yet in which case things can only get better.

We all have flare ups, bad times, feeling like a failure etc but they pass. As for the exercise when you have reached a place where you feel better excercise can be in many forms. You can gradually introduce things and take things away again. You definitely sound like you could use some immediate help (like the prednisone) to kick start you off and then feel your way around life slowly. I think, given the state you are in and how low you are that it is a massive achievement to even pick up the phone and be on here 😊😊 that also shows you have strength and want to help yourself.

Sorry if this is a ramble or patronising in any way. I don't mean it to be. I just so wanted to reach out and try

Thinking of you

Sending positive vibes and remember

Take every day as it comes, slowly and keep life as simple as you can.

Love

Lisa

😊😊😊

X

Oh you don't know how much that means to me. When i found out back in November 2015 I had this I wasnt prepared I guess for how bad this could get. The methotraxte seems to be working. My spots are cleared up other then around my ears. The arthritis on the other hand just seems to be getting worse. I go back for appointment on Tuesday with my rheumatologist. I guess I thought he was going to have a magic wand and I would be ok. A person could say I was in denial. This past month it has hit me in the face full force. Thank you so much for your words of encouragement. I guess I also thought that if I rested and gave in to what I was feeling was giving up. Now I realize that resting and taking care of myself is ok and it is what I need to do so I can get stuff done. I currently work in an office and some days it is so hard to get of bed but the bills have to get paid so that seems to win over my pain. I have learned alot by being on this site. Thank you so much for your words.

Wendy I wish I could do more. Methotrexate can take up to six months to be fully effective but you should know after 3 or 4 months whether it is working for you. Rheumatologist appointments are like gold dust. Write down all you want to tell him. Trust me when you go in there if you don't write it down you will kick yourself after. Ask about the prednisone or a kickstart for your body. Tell him the pain is worse. He can prescribe you a painkiller too. Tell him everything no matter how insignificant it may seem. How low you are, crying etc. These are all things they need to evaluate to see if MTX is the drug for you.

Something you said there smacked me in the face.... You work? In an office? No wonder you are exhausted, not resting and looking after yourself. Obviously everybody's financial situations have to be taken into consideration but if you can I would strongly advise you get at least a 3 month sick note..... This is one disease they will do that for without question because they don't even expect you to be able to work. I certainly couldn't. When they told me I couldn't work anymore they signed me off and I tried voluntary work and couldn't keep up with that. You poor love. In an ideal world you need to be at home, looking after yourself, getting used to the MTX is enough on its own! You need to be listening to your body. Denial is common but when you accept it and yes, it does smack you in the face, you have to look at your life and reasses what you can and can't do.

One thing I forgot to mention is for the pain believe it or not I used ice packs and cold compresses (difficult when it's everywhere!) but if you can hit your worst spots 15 minutes at a time really worked for me. Please let me know how you get on Tuesday and if you need any more help before then come on here. If you carry on this thread I will get an e mail to tell me you've posted but there are many people on here who will help you and it's good hear all the advice and pick and choose what works for you.

I think everybody will agree with the 'you must rest and look after yourself before anything else' one. It's an exhausting illness so being 'rested' is a great platform to build on managing it in a way that works for you. Exhaustion will make you weepy too and also amplifies everything until your nerves are jangling!

Sending much love

And restful vibes 😊😊

You can do this! Crikeys you are working and at this point.... I was at this point and not working. Be proud of yourself. Taking time off and reassessing things is not failing. It is part of learning about yourself, what you can and can't do, taking control of the illness and managing it so you have a decent quality of life 😊😊

I've done it again!!! 🙈🙈🙈

Anybody in here who knows me knows I don't do short stories! 😂😂😂

I just want to help!

☀️☀️☀️

Lisa

Xx

Hi Lisa and Wendy,

reading your posts today is helping me. I've had a 2nd day in bed (1st time for 2 days). Will be reading if not typing. I was medically retired in Oct 2014, after 4 years of exhausting myself. Acceptance is very difficult or I made it difficult. I, too see my rheumatologist on Tues, Wendy. Write a list, as Lisa suggests; I sent an email earlier this week to ensure I got my thoughts/questions etc across. Once again ladies, thanks

Hi Sheila when did you realize you needed to go on medical retirement? I have kept a journal but I sometimes because of my denial I guess I haven't brought it with to appointments. I will bring it with me this time. Good luck with your appointment. Chatting with Lisa has really opened my eyes to this disease. It's a hard word to say.

Lisa thank you so much you have alot of Information and the more you tell the more I am learning. I really appreciate the time you are taking to answer my questions.

Hi Wendy

I had Palmarplantar Pustulosis (type of psoriasis ) about 16 years ago, lasted for several months, was treated then cleared, swollen painful joints started in 2010, had to give up horse riding. Formal diagnosis of PsA in 2011. From 2012 I had a lot of certified sickness absence, 3 months at a time. In 2014 I was only fit for work for 5 months. The decision for medical retirement was made by my employer's occupational health doctor, management and myself, I was 49 years young.

Good morning Sheila 😊😊

I was 'bed hopping' myself yesterday. Seem to be having a flare up. I'm great at giving advice but no so much at taking it!

You didn't make acceptance hard. Acceptance is hard. When people ask me what I do I stumble around for an answer but you've helped me. "Medically retired". So simple... Instead of my long garbled explanation!

I hope you are feeling better today. 😊😊☀️

Lisa

X

You are very welcome. I certainly think this is one illness and treatment the doctors should give us more advice on. I was literally told I had PA given a prescription for MTX and told not to go out on MTX day, I would probably suffer symptoms of hair loss, nausea etc and we will see you in 6 months.

When it sinks in it is frightening and then is when you want to ask questions but you don't see your Rheumy for 6 months and the doctors don't know enough.

That's why this site is so good.

I hope today you have a good day

😊😊☀️☀️

Lisa

X

Oh Wendy you are so welcome. I would have replied sooner but for some reason these went to junk mail so I've only just seen them.

I hope you have managed to have a day out of bed now, although if you haven't (one of the hardest things I learned about this) you mustn't feel guilty. You have to learn to do what your body is telling you. Don't forget as well the emotional side of coping,?pain, worrying, decision making etc are exhausting too and your brain needs a rest as much as your body.

As I'm behind I will check the other messages to make sure I'm up to date with all.

Glad you got some 'help' from my words. Always here.... When my mail doesn't go to junk mail!! ☀️☀️☀️

Lisa

X