I would just like to share as there is nobody here to talk to.
Having a painful day and unable to get comfortable sitting down or moving around. Had full days pred and dihydrocodeine but seem not to be able to move along.
Frustrated as need to be getting organised for a trip away to see sister and mum. However this is the third day where I have ultimately achieved nothing and am running out of time.
Pain in right arm and shoulder is creeping back, and now pelvis, groin and thighs have decided to join in........ so I am having a moan
Hi,hope by the time you get this you are at least feeling comfortable.There is nothing worse than a bad day when you cannot find a pain free position (been there done that and got the t-shirt LOL).Have just started methotrexate as had to come off steroids.Am on two tramadol and six paracetamol a day still as told it can take 3-4mths to work (mind hopefully it will be my best Christmas present ever).Painkillers make the pain bearable but I dream of no pain (cannot remember what that is like except when on more than 11mg steroid).Hang on and hopefully your flare up will subside and you will have a nice time with your relatives.
oh dear i really feel for you have you recently reduced pred sounds like your having a flare to me just up by 1 mg see what that does otherwise, i am not knowledgable
enough to say anything else but i am sure someone will be able to help soon x
We've all been there. Sometimes one just wants to give up but, believe me 'it does get better, it really does'. Bad days happen. Try to find just one or two things you 'can' do. I spent a lot of time watching TV, in the DAY TIME!! Unheard of! I also was on my iPad for hours. I didn't want to move. I did though. I got up, wiggled around, walked round the flat, went to the bathroom more than I needed - just 'moved' a bit.
I'm 3+ years into PMR and pred now. It's a long time and I still have the odd bad day - even without an illness - who doesn't?
Hello gone girl, what's going on with you that things are presently so bad.
firstly, you say you are having a painful day. Does that mean that the rest of the time you are ok?
secondly, you say that pain is beginning to creep in, so is this something new?
if I remember you are new to this PMR lark. If i remember right, remind me when you were diagnosed and what your reduction regime has been like and most importantly have you ever experienced relief from the pains and if you did at what dose was this.
presently I'm thinking that you've recently reduced and you are experiencing either withdrawal or the beginnings of a flare. A flare is a bad enough situation to be in at the best of times but if you are going to be away visiting you'll need to be in as stress free a situation as possible, so you np may have to up your dose ASAP to get a flare back under control if this is what it is.
also, have you been over working your muscles recently. Our muscles cannot tolerate exercise the way they use to and we will all experience pain if we go over the top without rest.
Methotrexate can be used to enable you to reduce pred dose or on its own if you cannot take steroids.It is taken once a week and I was prescribed it after being sent back to the rheumatologist. Had to have a counselling session before starting and will have to have frequent blood tests. Only just started it so early days
Hello gone girl and gillian, preds currently are the only answer! Our condition is an auto immune condition that results in inflammation and the only drug that can reduce inflammation is steriods.
Some rheumatologists introduce mtx to patients who have difficulty reducing preds, especially the very high doses and if patients have been on preds for quite some time. Regards, tina
mtx however, is only a steriod spareant and currently there is little data that supports using it.
Some patients who cannot take preds are offered steriods as injections, as I said only steriods are capable of reducing the inflamation and it's the inflamation that causes the pain.
i have never heard of mtx being used a sole medication in PMR as it's a steriod sparer so if you are not taking steriods what else is it doing?!
may I ask gillian, are you still in pain?
also have you tried steriod injections? Hilary, please add your comments to the mix!!! Hilary couldn't take oral preds either and was most Ill with them. She was prescribed steriod injections and is continuing her recovery very well.
Hi Tina,have had time on steroid injections but they never lasted that long and was supplemented withNSAID's but due to kidney problems can never have them again.Steroids caused a lot of weight gain (not good post heart attack) GP sent me back to rheumatologist who suggested methotrexate (as previous two generations on female side had RA maybe she thinks there might be an element of that involved)
Will give it ago and if my blood markers improve then at least it will be working.
Ah yes gillian, that's always a problem when PMR patients suffer from multiple rheumatoid/arthritic conditions. What pain or flare up is related to what condition.
mtx is used as standard treatment for RA so hopefully if that sorts out any of the RA pain then hopefully whatever is remaining may be easier for the rheumatologist to sort out.
the wright problem is a real bummer. Many on this site have successfully lost weight, albeit very slowly, by introducing a low carb diet. As for you, a slow weight reduction would be good because although you have suffered a heart attack and weight loss would be great for your recovery from that, you don't want to lose a lot of weight quickly because that is not good for you either. All the best gillian. I do hope it all works out for you because living with pain is a horrible place to be. Regards, tina
Gone Girl, if your worsening symptoms have been around for a few days and they have followed a reduction in dose, then there is a chance that they will improve in the next couple of days, and you could take paracetamol for a couple of days to tide you over, provided, of course, that you are someone who is able to take paracetamol.
However, if you haven't just reduced your dose, then you are experiencing a flare in the inflammation and the only way you are going to get yourself out of pain is to increase your dose back up.
This doesn't sound like a one-off bad day, and if it were me, and especially if I was about to go on a trip, I would definitely increase the dose, perhaps just by 3mg at first in the hope it will be sufficient. In the case of very severe flares, a hike of 5mg is usually recommended, but see how you go on a 3mg increase first. If you do feel much better, then don't attempt to reduce again as you have travelling ahead. I hope you do improve so that you can make the most of what I'm sure is special time with your Mum and your sister.
Hi Gone Girl, I really feel for you, as the others say try increasing the pred and see if things improve. You do need to be OK for your trip away. Out of interest why are you taking dihydracodeine? It acts on the central nervous system, is it for something else you have?
Thanks folks for your words. I did get diagnosed with PMR ( I have fibro too ) so GP stared me on 15mg pred and that was amazing.
GP started me on reduction by 2mg but PMR returned so went up to 15mg again. However pain is creeping back on the 15mg. Its not as bad as first time so I imagine this is a flare up.
Yes my anxiety levels are pretty high as I feel like the all the meds I take are messing with my mind and body.
Last blood test showed I needed to increase the thyroxine I take.
Have had thyroid problems for a few years.
Also I began pregabalin as well as tramadol and dihydrocodeine for fibromyalgia. And citalopram anti-depressant, of course, for my "mood"
What a mess eh? But I know that there are people who have it worse, and some days I feel great. Maintaining the greatness is hard.
But thanks everybody for letting me vent my medication-addled spleen xx
Wow, you are really dealing with a lot! We know that stress definitely has an affect on PMR and it sounds like you're having a pretty stressful time with not feeling well and trying to get ready to go on vacation. I agree with Mrs O that increasing the pred by 3mg and seeing if you improve is a good first step. If that doesn't help up another couple of mg.
Also, take a time out from your busy day and try to find things that help you relax. A nice quiet lounge in the tub, sitting alone with nice music or.go for a short walk and stop for a special coffee or tea.
I really hope you will be feeling much better for your trip and certainly hugs from your Mum and sister will be wonderful.
Sometimes when you are having a bad day, you just need a strategy.
Maybe a strategy like make a list of the things you need to get done. Prioritize the list and start with number one task and then take a break.
On the break, think about finding something to make you laugh. Maybe watch a segment of funny movie. Let's say 30 minutes. They saying laughing is good for what ails you.
Then go back to the list and try another task. Also make sure the tasks are broken down into small parts so that it is possible for you to get through the fog of pain.
If you back channel me, I'll be happy to point you to a funny video my husband made based on the joke about the duck who keeps walking into a bar asking for duck food.
Anyway to overcome pain, you must find another way besides the meds to be distracted. Hope this helps.
Hi Tina.once in a while a sentence posted here hits home. When you said it's hard to sort out what is being caused by what, I immediately knew that was my situation. When you have a dodgy spine most of your life life the GP will put all problems down to spinal arthritis category. At 84 they find a way to save researching anything that does not pop into their heads. Today I have pain from multiple problems and the only sure answer is my hydrocodone source which I have refrained from using. Take care. Paul
Yes paul, multiple sources of pain are a real problem for a PMR sufferer especially if a pain surfaces just at the moment of a flare and/or dr's are keen to put every other medical problem we experience following a PMR diagnosis down the PMR. Lazy.
i am really lucky in that having played sports all my life I have over the years suffered sports injuries that now I'm 50+ are coming back to haunt me. Also, my PMR pain was very very pain specific. It was a pain I had never experienced before, and don't ever want to suffer again, so it is very easy for me, when I experience pain especially when reducing, for me to say if the pain is withdrawel/flare, or as a result of a past injury.
i'm also very lucky in that I am no shrinking violet and don't allow dr's to fob me off. If I don't think any symptom is PMR related I expect it to be looked into.
paul, I assume you live in the USA where hydrocodone seems to be prescribed more so than in any other country. Good luck, regards, tina
