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I just want to say thank you...

(28 Posts)
wildrose Sat 05-Nov-16 14:27:57

Hello. I posted a few weeks back about troublesome mornings due to my rheumatoid disease and fibromyalgia and want to update you on the changes I've made and to let you know how much your thougts and advice helped me.
Firstly, I am taking pain meds an hour before my planned start of the day and then taking a hottish shower despite the trouble I have getting to the bathroom. I find that the effort is worth it - even though the loosening effect takes a while I can, most times, manage things sooner that I was able.
I have sent for the compression gloves that someone recommended and plan to source the wax bath equipment as that sounds worthwhile too. My daughter is bringing me a gift today - an electric blanket :-) I am hoping this will have a good effect along with early meds and the hot shower.
One evening last week I had an early evening nap but didn't feel like going back downstairs when I woke and kept drifting in and out of sleep. My husband covered me up just as I was but next morning, having slept in the leggings I wear for lounging, my leg pain was much reduced! I bought myself three pairs of patterned ones to use as nightwear. The restrictive feeling takes some getting used to (and I never ever imagined sleeping in lycra leggings) but that's what I'm going to do!
My consultant increased my amitriptyline to 40mgs to help with the stiffness but I will see how it affects me after a week or so. It may be difficult to tell alongside these other measures I've implemented.
So, I am feeling a little brighter but much more positive and I have all of you who took time to read and post to thank for that flowers

grannypiper Sat 05-Nov-16 14:42:02

So glad you are feeling a little better, it is amazing how much little changes can make life much easier.

Teetime Sat 05-Nov-16 15:02:20

I am so pleased for you wildrose glad the medication suggestion helped.

jollyg Sat 05-Nov-16 15:13:19

Welcome to amitryptaline. It has helped me in so many ways.

On wards and upwards

thatbags Sat 05-Nov-16 16:10:01

Glad you've found Amitriptylline useful, wildrose. So have I. Do you take some at night and some in the morning or all at once?

Luckygirl Sat 05-Nov-16 16:28:16

I too take a similar drug to amytriptiline - it helps me sleep though pain and also blocks my bowels up good and proper!

I am so glad to hear that there are signs of lights at end of tunnels for you - I do hope your new strategies work.

Incidentally I sleep in fleece PJs with a hot water bottle - I really agree that being warm at night helps with pain. And OH likes a challenge! grin

wildrose Sat 05-Nov-16 16:34:06

Hi thatbags, I have only ever been told to take it between 6 and 7pm. I'm assuming you do things differently so I'd appreciate any tips you may have if you find they make a difference! To be honest I was wondering if he really increased the dosage because I was so low in mood but I've since read that the dosage for treating depression is much higher.
Glad to hear that it's helped you jollyg.
It's true grannypiper I feel better for trying to be more proactive and taking early meds regularly as Teetime suggested gets the day off to a better start most of the time.

wildrose Sat 05-Nov-16 16:37:58

luckygirl thank you smile I'm thankfully not affected in that way! I don't think I paid attention to keeping warm enough though - my husband might flee when this electric blanket does its stuff tonight ....

Charleygirl Sat 05-Nov-16 16:53:36

wildrose when I was married I loved a warm bed, my OH used to stand at his side, flapping the duvet to create a draught, I was not a happy bunny!

It is very important to be warm especially as you have RA.

cornergran Sat 05-Nov-16 17:08:41

Good news wildrose, enjoy being warm in bed smile

thatbags Sat 05-Nov-16 17:22:54

wildrose, my GP started me on a low dose both morning and evening. I can't remember what it was, maybe 20mg each time. I later asked if I could up the dose a bit and he said yes. I've also swapped so that I have a higher dose in the morning rather than at night because I was waking up with a headache too often (apparently this can be a side effect).

So now I take 40mg in the morning and 25mg at night. This seems to work okay. It doesn't get rid of pain entirely but it does smooth things over, so to speak. I get flare ups sometimes but they seem to be associated with the common cold virus and die down after a day or two. I get a lot of colds, mildly thankfully.

My GP seemed very relaxed about my upping the dose till I found what worked. I take Co-codamol as well and sometimes aspirin, also as well.

Mary59nana Sat 05-Nov-16 17:56:38

So glad your feeling more upbeat Wildrose RA is such a painful disease. Keeping warm is so important I've never like having a shower it always leaves me chilled then I feel more stiff so a nice soak in the bath help me so much ....hot water bottle is a must but have to be so careful when unscrewing the top when you have painful stiff fingers

chelseababy Thu 10-Nov-16 08:06:15

If you have trouble with hot water bottles use wheat/rice bags which you heat in the microwave. I made a rice bag with a bag of value rice an a swuare of cloth - very snug!

rubylady Fri 11-Nov-16 05:15:34

wildrose If you go in the car anytime, you can get massage pads with heat that connect to the cigarette lighter socket and it will keep you nice and warm and give your muscles a little vibration while you travel, keeping you relaxed. I have one and it makes a huge difference to my back. If I find it annoying while driving, I tend to take ten minutes when I get back in the car, have my flask of tea, painkillers and a quick vibrate and then loosen back up and drive off.

I too have gone off showers. I have a warm bath now, with Epsom salts (magnesium) in, which are known for relaxing muscles. I have leg sores from the water retention and catching myself and causing sores, so the salts help those too.

It sounds like you are doing a bit better, which can be a huge emotion changer. Stay looking after yourself and let us know of anything else which helps as we can all benefit from each others little tips. smile

Barmyoldbat Sat 12-Nov-16 10:32:46

Good to hear, I have axactly the same problems and have a hot shower every morning, an electric blanket which is a god send and I also do very gentle exercise with my fibo group which I find helps. If you can a soak and gentle movement in a hot tub helps no end. ( my friend has one and lets me use it). I also take a very does (2 mg) of steriods annd this helps the ra. Now and again I have a flare up and have to increase the dosage for a while but it controls it. Good luck, you can get a single electric blanket and put it just on your side.

sillup Sat 12-Nov-16 10:46:26

Lucky Girl try eating a kiwi fruit a day. Since being told of their powers a few years ago, I have been regular for the first time in my life :-)

annsixty Sat 12-Nov-16 11:06:28

I was told about kiwi fruit when I had my knee done and it does work but I have 2.

Nanna58 Sat 12-Nov-16 11:34:59

So glad you are feeling better. I have auto-immune arthritis , so I know it's a bitch! Think the trick is what you are doing, and I decided to do , that is keep positive, and most of all be pro-active. Read up, try different things, I've tried loads, (some wacky!). I keep the tricks that work and just discard the others. Pineapple extract (bromelain) is good , as is turmeric which is such a powerful anti- inflammatory I read that Cancer Research is trialing it. All the best to you

Welshwife Sat 12-Nov-16 11:42:45

This is such an interesting thread - did not see the last one but was away in UK for a month. I am so glad you are better with the regime wildrose. I am lucky enough not to have that form of arthritis - just a reasonably mild form of osteo and when it gets painful Voltarol usually sorts me out.
On the other hand OH does have what the doctor here calls Polyarthritis - it affects many joints but seems to be an autoimmune variety. About 5/6 years ago he put OH on a dose of cortisone as he said he might well find it all went away after a couple of years(!) - OH had gradually reduced the amount he was taking to hopefully eventually come off it. Over the summer he did this and finished taking cortisone while we were in UK - within a few days he was so immobile - he had great difficulty getting in and out of the car or up and down the stairs or getting out of an armchair as for shaking hands he found that excruciating. So as he had some of the cortisone he started to self administer and put himself back onto it. He has since seen the GP and is back on it permanently by the look of it but within about 3/4 days he was much much better and is now well on the way to being his (fairly) normal self. Is anyone else on cortisone (his dose is now 12 which is a low one we are told - 80 being the full one) and finding it good or having bad effects?
Have just told him about the kiwi so we will give that a go too.

Nanna58 Sat 12-Nov-16 11:59:37

Hi Welshwife, I had Cortisone when first diagnosed back in March, not sure of dose as was given via slow release injection, it really helped a severe flare and I can have another if things get too bad to cope without, hospital said just to ring. I think it's trial and error to get the lowest dose of steroids you can whilst still retaining the benefits, glad your OH is better

Welshwife Sat 12-Nov-16 12:23:08

Thank you Nana that is very interesting - our GP did not mention anything about a flare up etc - so will be interesting to see how it goes. Did you find that the Cortisone had the effect of making you feel forever hungry? OH has always had a good appetite but if I gave it to him he would now eat twice as much!

Nanna58 Sat 12-Nov-16 12:50:17

Love my food so difficult to tell! Seriously, yes I was far more hungry. Have always struggled with my weight which was not helpful to my joints. So tried to tread carefully eating enough of the healthier foods to stop being hungry without giving myself carte blanche to eat cakes ,sweets etc
"Cos I'm on steroids you know! " my arthritis affects joints, skin, and organs, sometimes it gets much worse, 'flares' if I am unwell, particularly with a sore throat. My Rheumatologist said strep throat is often the trigger to these diseases in people who are genetically predisposed. Not sure if it's any help , but I followed the Slimming World programme which shows how you can eat to feel full, but not put on weight. The recipes were very' man friendly!' my husband loved them .

Marydoll Sat 12-Nov-16 12:55:27

I have found that when I am steroids, either for my chest or rheumatoid arthritis,I am ravenous. I once put on two stone in a couple of months. I was in a toilet in a restaurant and glimpsed a wee fat woman, whom I didn't recognise, staring back at me in the mirror. It was a awake up call. It took me a year to get the weight back off. Unfortunately, it was unhealthy food like chocolate I craved. I'm much more careful now.

Barmyoldbat Sat 12-Nov-16 13:09:46

Yes steriods do seem to make you hungry, or in my case, enjoy my food. But on a low dose of up to 5mg daily I didnt put any weight on it is only when I hit 10 mg a day that it starts to go on but I keep a really careful check on it and I am very careful what I eat. In fact during the last flare up When my weight started going up I joined Slimmers World to help and at one point I was slimmer of the week. As soon as you start reducing then so does the weight. Another point, as I am taking steriods long term my dr has put me on vit D and calcuim tablets daily, if I take over 7 mg then I also take a weekly calcuim supplement. At the moment I am enjoying the winter in Cambodia and find that the heat and the diet help everrything in fact I am losing weight again. Thats rice for you

annodomini Sat 12-Nov-16 13:15:12

I've been on gradually reducing prednisolone (steroid) dosage for over five years for polymyalgia rheumatica and I put on a lot of weight - though I was always a yo-yo dieter. Now I am on a very low dose, I have put myself on a low carb diet and the weight is falling off nicely. I don't feel nearly as hungry as I was when I was on higher doses.