are my symptoms normal? and question r.e anti inflams

millie78

Hi all, i often read about other peoples RA and it seems so very different to my own symptoms.

When i have the worst pains i cannot get comfortable at all, sometimes i have to fidget about continously to make myself feel another sensation rather than the pain i'm in. So people say rest - i can't because laying still seems really agonising. Even if its in my legs so i can't stand, i will sit in a chair and fidget! Is that normal. During worst case i've attempting scalding the affected limb with hottest water i could get in the shower to numb it from pain but it still didn't work.

My question about anti-inflammatories is, do you decide to just take them everyday regardless? I'm sure my consultant recommended i take them as and when necessary. But sometimes that comes too late. E.g. I was fine one day, so don't take anti-inflams, but wake up next morning with aches and pains so take the stomach protector, then have to fit in breakfast (which i don't normally manage time for before the school run) before i can take an anti-inflam, by which time i've already done a mornings work and so am in agony. I can see that the solution would be to take them but continously but a) i prefer to try and avoid taking meds unnecessarily b) it gets expensive! c) they give me slight upset tummy which i put up with, but if that was continous it'd drive me mad and d) sometimes i may have a whole week with no pain or very manageable pain and therefore would have been a whole week of unnecessary meds.

Thank you for listening and sorry for boring you regulars with same old stuff probably!

traluvie

Never apologise millie,,

We all have things going on in our head that is better said than unsaid, that is why the forum is here..to support eachother..

I now take my diclofenac as and when i need it as i feel all the meds i take are not good for me, so if i can cut down i will,, i used to take one in morning and one in the evening and on a bad day another at lunch..so it wasn't necessarily like i was taking full dose everyday,,How it will affect me i do not know yet as i have only just started, so will let you know..
My stomach was dodgy for a long time, but it has now seemed to have settled down, wether that is because my body is now used to it i don't know,,
Can you talk this through with your doctor to see if you can find an alternative..?.x

elnafinn

Hi Millie

I have read your other posts just now and must congratulate you on bringing up 4 children. You must be kind to yourself too though and perhaps as time goes on you could become friendly with another mum and perhaps take some of the school runs in turns so you can have a bit of a break. You are still being a good mum if you do that. You are also helping another mum out. That sounds a good idea to ask to get as near as you can when dropping off the chldren to school. That would be a great help to you.

I have OA but regarding the anti inflams, if they are causing you stomach problems then you should consult a medic. You can be put on another type of inflammatory med. I used to take them regularly so they got into my system - popping them every now and again is probably not making them work as efficiently. By all means if you are having a good few days then you could lower the dosage.

I don't know why but you mentioning the word fidget when in pain/discomfort made me think of Restless Legs Syndrome which can affect the arms as well as the legs. Fidget is the exact word to describe RLS and it can be truly debilitating. Rheumatoid arthritis can be linked to RLS although many people only suffer with RLS - it can be hereditory for instance. Aw dear Millie,trying to scald your painful limbs in the shower ...... as you say that will not work. Please try not to do that.

Hugs
Elna x

julie47

Hi millie and welcome to the forum

I guess you have to do what is best for you with the anti inflams

I have ra and take them every day twice a day, along with my other meds. If I didn't I wouldn't be able to move.

As for the prescription charges, I have a pre payment card. This works out alot cheaper for me. Perhaps you could enquire about one too.

Hope you find a solution that helps you
love juliepf x

stickywicket

First off – don’t worry about ‘boring’ us, Millie. Anyone who’s bored can just click off the forum. So, if we’re still here, we’re not bored.

Sitting still for long periods isn’t good when a joint is hurting so ‘fidgeting’ is probably a reasonable response. Scalding yourself never is though.

Please bear in mind that I’m not a doc and have no qualifications other than too many years of RA but it seems to me you might be starting now to experience symptoms on a much more regular basis and, as such, the meds might need a bit of tinkering with. None of us like taking them it’s just that we like the effects of not taking them even less. If your arthritis isn’t under control your joints could be damaged permanently so a few more pills now might prevent a lot more trouble later.

I think you need to check out with your GP (who can deal with the anti-inflammatories – it doesn’t have to be the rheumatologist) where you go from here. My guess would be that you need to take them regularly – always with food (A biscuit or some fruit will do – it doesn’t take a full meal) to protect your stomach and always with a stomach protector every day. (I just keep mine by the side of the bed with a glass of water & take it as soon as I wake up.)

I do realise that, if you’ve managed OK up to now, taking the anti-inflammatories as and when needed it must seem like a big jump to be taking them regularly. You could always make a telephone appointment with your GP to talk it over. I hope things get better for you soon.

millie78

Thanks tracey. Do u take just one lanzaropole in the morning even if having 3 diclofenacs in a day?
Elms very kind words thank you. I know scalding is silly I was just desperate I was breastfeeding at time so no meds at all.
And thank you Julia for reminding me about prescription card. I currently get maternity exemption but I did mean to look into this for when maternity ends.

traluvie

millie78 wrote:

Thanks tracey. Do u take just one lanzaropole in the morning even if having 3 diclofenacs in a day?
Elms very kind words thank you. I know scalding is silly I was just desperate I was breastfeeding at time so no meds at all.

Yes millie i do, i have only been advised to take one..I was having dodgy tum for a while, but now i also take peptic(i think thast what it is called lol)like gaviscon and lactulose and senokat, so now my stomach has settled, it might be a case of finding the right meds that suit you..Took a while for me, but my tummy is smiling now lol..xx

elnafinn

Hi Millie

Diclofenac is a very good anti inflam and I did take that for two years and then my stomach rebelled big time. :roll: I was put on another anti inflam Arcoxia /etoricoxib) and have had no trouble with them

Aw bless you, of course you would not have been on meds when breastfeeding.

Keep on talking, my lovely, it does help and as you can see by the reponses we are trying to help and support you.

Hugs
Elna x

skezier

hi Millie,

sorry your having a it of a rough time there and hope taking the anti inflammatories really will help you.

the pains in the side... get that one but mine is the ribs and the lumber and like you resting isn't always the best thing for it.... i often wake up feeling i am genuinely being cut in half..... its a sure sign i been lying either wrong or for too long.

i used to take the anti flams as needed but about 16 years ago it was originally 3x a day and now i have the 150 diclo as slow release but the stomach protection is necessary. i didn't have any originally and it took 4 years for the 1st ulcer.

i have a lot of gastro trouble Millie so am glad they have checked you out that way. i also have the introcostral thing and my ribs are getting the arthritis as well so they say thats where some of the side pain comes from the rest being deflected from the sternum and the back.

it no joke though flower and i hope the regular tablets will help you. Cris x

dreamdaisy

millie, one of the biggest problems is that we are all different in how our symptoms present and in how we deal with them. I have never thought of the meds as a 'use when required' option simply because I have never been told to use them that way. They have been presented to me as a way of slowing the progress of the disease and to ease the worst of the symptoms. The only ones I do use on a 'as and when basis' are the pain dullers: on a good day it's only two, on a bad, well, it's more! (The day-to-day ones are co-codamol 30/500.) It takes time to find what suits you, what works for you and time to develop the coping strategies that work for you. We will help on all those fronts as much as we can. DD

suzygirl

Hi Millie, I used to take ant inflams reguarly but am longer able to due to kidney function. I was thinking of your fidgets and I do fidget a lot. My cat tries to curl up next to me to sleep and I drive her mad fidgeting, trying to get comfy. I had never really thought of it before. I can't sit still for long, and I like to potter to try and relieve the stiffness.

You are best speaking to the doc about the meds, I thought antiflams were best taken continuously although you could take them for a week when flaring. Do you use heat or ice to soothe joints? Although obviusly some joints are harder to ease than others, thinking of painful hips!!!

Hope you have a good day.

frogmorton

Hi Millie

i take the stomach protector every day.

Then you can add the anti-inflam if you have to and l also have a prepay so the cost is irrelavant to me.

It's cheaper than the cost of two of my meds every month

Love

toni xx

salamander

I keep my stomach protectors by my bed and take them on waking. I set the alarm if I need to be out earlier. Don't have a choice as on steroids which have to be taken in the morning. A small price to pay for relief from the pain.