Hi I know that I said that I was going away but things are catching up on me a bot now with all this pain and I've even got some visible swelling going on at last as my ankles are red and a bit swollen and the whole of me from neck down is raging with heat today. But I can't face the GPs AGAIN so wonder if you can tell me about Diclofenac.
Against all my promises to myself, and on weary partner's advice (kept awake a lot by my whimpering and moaning), I snuck back into surgery and saw a nice female locum yesterday who said my right shoulder and arm could be an RSI or RA and put my name down for physio - at last something non-drug related that might actually help me! Five months now since I went to GP with pain in wrists and knee and asked to see a physio and look where it's got me? NOWHERE at all!
She didn't make me feel like a hypo unlike my usual God's Gift to womenkind usual chap - but instead gave me Diclofenac 50 mg tablets to be taken three times a day with the 10mg of Amytriptyline I already take and like (although pain relief effects seem to wear off now but it calms me at least). I took 3 of these yesterday after food as advised but today I found I had put on 3lbs in 24 hours despite not eating much at all? Also I slept really badly last night with pain in just about every part of me, but especially in my left shoulder down to wrist. Today I woke in a terrible muddle but had a work meeting and other stuff early so had to drive the car into town. Now ankles all swollen and I feel wiped out. My tummy was sore this morning so I decided to drop the Diclofenac for the time being. Once again grumpy pharmacist gave no side effect stuff so had to look up online but I'm not sure whether this stuff has to be taken all the time and weaned off slowly when pain dies down or what? Does it make you worse when you stop taking it?
The wave of heat I get in various areas seems to precede the pain that then arrives in same areas - does this make any sense? Is it the inflammation even though there's seldom anything to see or feel and should I be brave and bully GP for another ESR test about 5 weeks after last reading of 44 after steroid? I find going into my surgery rather humiliating now but I am really aching all over and night times are becoming dread worthy as I often can hardly move a pillow or lift the duvet. Don't know what on earth to do next - if anything?
So I decided to break my vow of silence and ask you experts what you think of Diclofenac as pain relief - should I continue to avoid it? Feel miserable because it's my close friend's wedding tomorrow and I've been so looking forward to it. I really want a glass of bubbly if possible as that would compensate for the humiliating hobble and fact that I'll probably be the only one sitting out on the Scottish dancing (although I'm rubbish at it anyway!). Your advice about pain meds and other things I can do tonight or while I wait until next rheumy apt in November - especially following on from Mands' Pain Relief blog - would be much appreciated.
Hi Tilda, i took Diclofenac but it really upset my stomach, you can however get something to protect the stomach over the counter or GP!!
If your suffering a lot at the moment Tilda don't stand for it, make some noise at your GP's surgery and don't think twice about bothering them, sometimes it's the only way to get a result.
Sometimes we have to try different types of pain relief to find something that suits us, we are after all individual in that are too. I got through loads of different ones until I found something to suit. I also use Voltarol gel for smaller areas which is in fact diclofenac but using it this way I find better as it hits the spot bypassing the stomach. It still doesn't suit everyone though mind.
I hope you get sorted soon Tilda, nothing worse than never ending pain.
Take care
mand xx
Thanks Mands. Conscious that Friday is coming up and that means too late to see the doctor until next week if this gets worse but I have got the diclofenac at least and plenty of over the counter meds so just wanted to know what folk here think about it. I haven't had sore tummy for ages but I did get one this morning and then the weird weight gain too. When I read contraindications on line it said that unexplained weight gain was a side effect and if I start gaining weight having tried so hard and succeeded, on top of everything else - I will get really low. I make myself walk as much as I can despite the pain as it seems to help at the time - where resting seems to intensify the pain - even if I'm hobbling all the way. I am really desperate to lose weight.
But in the night I find I hardly care what i take and just stumble slowly to bathroom and grab whatever hand lands on from med cabinet and this seems to be co-codimol right now - which does appear to make a dent. But maybe I should give the diclofenac another go after the wedding as I didn't really give it a chance - just one night of intense pain a sore tummy and that was that! The gel sounds good but frankly I wouldn't know where to start today.
Tilda x
in reply to
I know what you mean, I sometimes feel like taking a bath in the stuff!!
It's all about finding that happy medium, a little of this a little of that. Rather than too much on one thing that could sometimes do more harm than good.
It's that "pacing" word again that only comes with practice I'm afraid. Anyway like I said keep pestering whoever you have to, GP's consultants only have half the information on your diagnosis the other half comes from you explaining your symptoms and how you feel!! If they don't hear from you they just presume your ok and managing. In the end we do have to manage our disease but we need to be on the right medication in order to help us do that.
Take care
mand xx
Right then Tilda my dear. You are certainly going through the ringer at the moment.
Diclofenac. I had to take cimetidine or something like that to protect my stomach because it is very harsh on the tummy.
I too put on weight with the blooming Diclofenac. It's like other drugs, it takes a little while to build up but you should notice a difference straight away. but you have to take it all the time for it to be at it's best. It's no good just taking them when you can't stand the pain any more. Always with or after a meal. For constant acute pain I would say you would need to take something else.
It is usually prescribed for osteoarthritis and the inflammation caused by erosion. Not the inflammation in Rheumatoid Arthritis caused by the old wonky immune system.
You need to do some muscle building exercises, not weight bearing exercises, because this will just make the joints worse. So physio will be good for you hopefully. Give you some exercise which does not involved standing up or lifting weights. You need to build the muscle up to take the load off the joint in Osteoarthritis.
When all my joints are aching I always smother them in Biofreeze gel. It is very effective. Can you try and take time to relax my love? I can almost feel your frustration and fretfulness coming across cyberspace!
I know it is terribly frustrating and stressful, I have been where you are. in limbo-diagnosis-land.
In the meantime, take care
Julie xx
ooh dear.. hope you meant you took one three times a day after food.. ?and not all three together as your blog suggests.?
. Diclofenac.is. not .. suitable if you have high blood pressure or any heart problems? it sounds like you have some form of fluid retention.. with swollen ankles?. seek advice from a different gp or your out of hours service.. as a precaution stop the diclofenac.. but do seek medical advice
Also as others said. stomach protection.. you can buy ranitidine.. over the counter v cheap or some of the prazoles other the counter without a prescription these are not cheap about £8 a box plus..
you are best seeking medical advice as diclofenac is new to you and they need to know about the stomach problems and swelling.. your weight gain sounds in your case like fluid!.. please see me previous answer too!
Alison xx
Thanks all. Should have been clearer I meant three times a day after food - it's just that a bowl of yoghourt with a couple of almonds might not count as mealtime but otherwise I follow instructions I promise Alison (even if grumpy pharmacist gives none! I did have high blood pressure a while back but it was back down last I was checked also underractive thyroid prob (i take 125 mgs thyroxin) but locum knew about these as she took blood for it and also I mentioned that I have gallstones and she said that wouldn't be a problem. Never mentioned if they are addictive though and I don't want to take and then find they don't suit and pain to get even worse if I come off them. Sorry if I sound so stressed - if it wasn't for pain at night I would endure it all but find being woken by pain and waking partner who does nights really tough. Have taken photos of swollen ankles but I mentioned to usual GP and he inspected and didn't seem concerned.
But the good news might be that my choir starts up again tonight and the chief physio who was in at my rheumy consultancy sits right opposite me and when I emailed her she did want to help and has direct line to him so reckon if I tell her about my ankles if she notices my hobble then she might be able to push for things to happen sooner rather than waiting until November. She did say we could talk tonight but not keen as its her time off after all.
I've always found our own local physio excellent so that's what I'm really pleased about but think these physios might be able to do more for me than GPs - who keep pushing drugs and steroids at me without explaination. Thought about doubling dose of Amitriptyline up to 20mgs tonight as a one off but does that sound dodgy self- medicating? I could take a Zopiclone instead so that I get a good night's sleep and fit for tomorrow but might end up a zombie at the wedding - or even more of one than I feel today!?
You sense my desperation Julie but am so very keen to a) stick to fitness regime (so looking forward to physio as I know the rest of my body needs work and b) get some sleep and pull self together c) avoid the GP surgery if humanly possible because I hate being made to feel like a malingerer as much as I hate being invisibly swollen and stiff!
Tilda x
Ps sorry Alison but could you tell me are fluid retention (something I vaguely remember from pregnancy days) and inflammation connected or completely different? How is visible swelling of RA different to fluid retention in ankles if they are sore and the outer ankle bone on each side is red as well as the foot looking swollen to my eyes also. My hubby noticed them last night and took some photos to show GP if he ever asks.
Hi Tilda. Alison will probably answer shortly but just to answer the fluid question. The swelling could be oedema, which is what you have in pregnancy too. You can get pitting or non pitting. The swelling I get is usually pitting, if you press the swelling it will leave and indentation in the skin this is known as pitting.
It sounds to me that the swelling may be something different if it's not pitting, I may be wrong but Alison will tell you more I'm sure.
Putting on the weight like that does sound like fluid retention, which can be a sign of other things.
Good luck
mand xx
thanks mand you saved me a job xx was thinking oedema too. you must get this checked. ra swelling would feel hot.. due to inflammation.. as I said previously please take local medical advice.. If you have a zopiclone prescribed too you recently for sleep then you could take it.. dont alter your amitirptyline without consulting gp
Hi Alison. Its a lonely old business this don't you think? I know we all experience symptoms differently but I'll try and be as precise as I can. I've just got in from choir practice and looked at my feet/ ankles and they don't feel hot to the touch. They are hot though - in fact when I stay sitting in any position for longer than five minutes a lot of me - my feet especially - feel liked they have been dunked in deep heat or boiling oil. Tonight, despite putting on a brave face and smiling at everyone - singing away and hearing about people's summer holidays and being confided in about their problems etc - I felt like screaming instead of singing by the end.
The best way I can describe it is feeling that you have if you used Vicks chest rub or something with eucaliptus and rubbed it all over the body so it feels hot and cold at the same time? In fact I feel like I've swallowed gallons and gallons of the stuff by mistake and it's missed my digestive system somehow (thank heavens!) and sunk inside me to my toes and then up into my ankles calves etc. It misses my bum and tummy thankfully and then starts again in the middle of my back and rises up into shoulders neck and down arms into fingers. To put it dramatically - I feel like I'm burning alive.
And the pain is not so extreme tonight as the burning i but I know that it will be once i've lain still and been static for any length of time. Then by the middle of the night I often can hardly move and by morning feel like a lead weight on my feet so stiff and sore. But as the day passes by and I move around continually it gets more bearable again. It doesn't go away though - just takes a back seat until evening when I sit still and all freezes and rages again.
I never had much oedemia at all during any of my three pregnancies so not sure how this looks. I had very high blood pressure and was very anaemic in the final stages - and in the first pregnancy so badly covered in eczema that I spent half my life in dermatology wards resisting steroid injections! But not much swelling at all for me. Which is good because I recall this meant pre-eclempsia and as my blood pressure soared in second and third pregnancies this would have been very scary. But no not for me. Sorry I'm going on so much but this place is my only hope of someone recognising this feeling of being burnt alive and telling me I'm not going nuts! Cant face the GP and his offer of steroids until this thing has a name and I know what I'm dealing with if that makes any sense at all. Sorry to be such a bore and go on so much.
Tilda
Ps the swelling is round my ankle bones and up sides of feet towards little toes which are bright red and it isn't really pitting just baggy and soggy to the touch. The ankle bones themselves have a red patch on each side. I know I'm a wimp but I've described it to him before and cannot face the GP tomorrow. I'd honestly have to be carried in there to face his look of disbelief once more it's more humiliating than I could bear and think I'd blub this time round.
I was taken off diclofenic back in june as i had diverticulitis, so be careful with them. Keep on at gps as in the end they do listen. I was at the hospital yesterday as an emergancy and my ra nurse was lovely. I think she knew there was something amiss with me when she rang last week. It turns out i've got fibromyalgia and like you i've got pain in shoulders and other places. The pain isn't any easier but i know what is wrong so i can work round it.
Take what is prescribed and give it a chance. I found i was in less pain with the dicoflenic, but i wasn't told that there was stuff to stop side effects of the drug. When your in pain you don't take in half what they say as you just want some relief from the pain.
Go and enjoy the wedding and try to forget the pain or put it the back of your mind for the day. I do find if i'm out and about with other people it is easier to forget the pain a bit.
Hi Sylvia - just home from wedding and wanted to say that you are so right about enjoying ourselves and having a night of pain when possible just by being diverted! We came home when nightly pain got to much in my hands and feet but by that time it was the full celeidh and neither of us up to Scottish dancing. But the best bit was the ceremony and the dinner and had great fun. Hope your RA plus Fibro is giving you a good kind of clarity. I think suspect I've got a long way to go before I get this too but am feeling lucky to be me so not complaining really! Tilda xx
I'm glad you hada good time, despite the effort it takes to get ready and to get there. I've news now on my fibro i've started on 2 of the drugs that they want me to take, gp doesn't want to overload me until we know if they are making a difference. So i've to go back in a month to see how i'm doing, also i've got a copy of the letter that the hospital sent and it says my knee should be looked at again as he feels its not right. This letter is 3 pages long, listing all drugs that i'm on. RA is stable and its not the cause of my latest problems.
Today i feel better in myself after having a good nights sleep, i would reccomend amytripolene it gave a restful sleep. Its amazing how things look when someone actually belives what your telling them. I know it won't be a easy path i'm going on, but at least i've got some clarity, which sadly some of you on here haven't got yet. My answer is to keep on at docs and hospitals until you get an answer, they have to listen in the end even if you see another doctor which is what happened to me. Also i've got a good ra nurse and she got me in to see this doc while mine is on holiday. Clever thinking on her part and i'm really grateful to her.
My previous ra nurse had to retire due to ill health, sadly she died and was buried last monday, she will be sadly missed. Just goes to prove that even if your in the nhs they can't alsways save you.
I'm now going to go shopping to get some meat, i'm going to keep coming onto this site as i feel its the best around and the people are so understanding.
Take care,
sylvia. XX
Well Tilda, I think your medical history sounds like you have had a few different problems medical problems both now and over the years ?so as I said its best to seek medical advice..
Thanks Alison and Sylvia. I had another rubbish night with pain in both shoulders and arms come roaring back so I took co-codimol at 5am and it takes the edge off. That's good news that you have a name to put to your pain at least Sylvia - sorry though that it took you to such a desperate point before they finally gave you the diagnosis. I have thought that this might be Fibro too from what I've read. Strange how we feel a certain comfort in knowing what we have wrong with us isn't it? I think that's half my problem because my GP was so sure this was RA from my positive RF and raised ESR that he put me on Sulfasalazine and I spent months absorbing this idea only to be told by rheumy that it might or might not be and wait until November to clarify one way or another.
I will go back on Diclofenac tomorrow after wedding and give it the weekend - if not working out I'll go and see GP early next week. If anything more kicks off this weekend I'll phone NHS 24 but hopefully it won't. Thanks all for your help and advice once more.
When I am having a RA flare I get a lot of fluid retention and end up with very fat looking feet/ankles and hands. My blood always show that my albumin (which is a protein in blood and helps to control the balance of fluid between blood and tissue) is low when I'm having a flare. My dr has said it's necause my body is just working so much harder than normal during these periods. Perhaps this could be same for you?
Also, diclofenac is a non steroidal anti-inflammatory drug (same family as ibuprofen) so is good for any pain caused by inflammation. It is very irritating to stomachs so like you have been doing it is important to take with food or a glass of milk. There is other medicines in this family of pain killers that cause less gastric irritation if it doesn't suit you. Having said it's meant to be effective on our type of pain, I, like you, don't find it particularly effective. I find a decent dose of codeine (up to 60mg) is the only painkiller I've found to really make a difference to me. Particularly at night as it often makes me feel bit dopey as well at a larger dose. As with all meds though it had side effects. It causes constipation and people can find it addictive if taken long term but I find for short term use during a flare it is really good.
Like someone earlier said, everyone is different so if you've not found the right pain killer combo yet don't be afraid to keep seeing your GP. It's what they're paid a lot of money to do!!!! You can always ask to change GP's if you're not happy. Good luck and hope you start to feel better soon and enjoy wedding.
Catherine
Hi Catherine. Thank-you. I followed all of your advice took myself into GP again this morning and got the same nice supply woman doctor (not a locum but regularly used when anyone is away I think) and she looked at my feet/ ankles and said could be water retention of inflammation but thought I shouldn't take the diclofenac again because fluid retention is a side -effect. She suggested I take co-codimol as main pain med but alternate between that and other mainstream ones as warned it might make me a bit dizzy and constipated because of the codeine. So just as and when required.
She took blood for ESR and CRP (had taken CRP with thyroid test as a precaution the other day and it was only slightly raised) as she thought the intense heat around joints sounded more like rheumatoid inflammation than fibro. I explained about my sons not showing inflammation when they had fractured wrists and she said she'd read up on my notes and would add that info in. Thinks it all helps to give rheumy a bigger picture of what's going on so I should have inflammatory markers taken monthly or whenever i feel generally unwell and inflamed. Feeling so much better about everything now - just being taken seriously and encouraged to make suggestions etc is such a relief - although she did say I already am being taken seriously by the practice and not to fret about coming in any time - but I do get so paranoid they'll think I'm a pleep (as they say in these parts about moaners!?) Cheers for now, Tilda
Hi Tilda, you take me back a year- i went through all you are going through !
Right- diclofenac is good to take but has to be taken regularily for it to help as an anti inflamatory and you MUST also be taking daily omeprazole or lansoprazole prescribed by gp to protect tummy.
Amitriptylin is good for night time pain but can take a week to start working and you should take it 12 hours before you want to get up, otherwise you can feel groggy in the mornings.
Co codamols can also be taken 4 times a day but a very common side effect is constipation- which you can do without with all the rest that's going on so either get on prunes/ dried apricots or what ever else gets you moving- or gp will prescribe something if asked.They can make you feel drowsy which is good at bedtime but can be problem during day- they come in 2 strengths 8mgs/ 500 and 30mgs/ 500 so you can ask for stronger/ less strong if you need to.
I think its a good idea to have monthly CRP bloods taken, that way you can see if the inflamation is settling or not.
I did have some oedema but it seemed to settle in time.
Hope that's helpfull- the only way is up, take care, x
Hi Cherry - thanks but I'm avoiding the diclofenac for now. When you say you went through it all this time a year ago when were you finally diagnosed and what brought the doctors to that decision would you mind telling me? The GP yesterday said it can take years to diagnose and not to pin too much hope on things being resolved by November - which will have been about 8 months since i first presented with symptoms at GP surgery.
Woke at 5 am with my left little finger in hell and the right shoulder back to it's tricks in full so downed a co-codimol and it's just kicking in now taking the edge off. I will check out the dosage but don't want constipation on top of everything you are right so may just stick to a dose when required, because during the day when I move about things are more manageable with paracetamol and ibruprofen - although these block me up a bit too!
co-codamol also comes as 15/500mg its trade name is codipar, thiis is what I take
Alison
in reply to
But failing all this a large tumbler of whisky in the evening is now proving very medicinal with no adverse side effects!
Thanks -I take it that this be prescription only Alison? If so it's free up here so I will ask next time I'm in.
Just checked and it's 8mg/500mg tablets I've been taking. I could take 1-2 tablets says on the dosage so could theoretically take double but I only ever take one per night. Think I'll ask for some stronger ones of the 30mg/500 and take one at night same time as the Amitriptyline to get a better night's sleep.
codipar// 15/500mg co-codamol is prescription only xx
Thanks Alison - by chance I went to a different chemist just now to pick up some more co-codimol as I've run out. This pharmacist was really helpful (wanted to tell you this in case you had a terrible impression of this place!) and when I explained what was wrong he said that 15/500mg would be my best bet and I should go to GP for a prescription. Unfortunately I've left it too late for tonight so bought another 8mg packet - but will try and see the GP later this week.
My wrist has just swollen up and I can hardly move my right arm or right ankle so hopefully I will have something to show him at the same time (bound to go down by then). Read more about Fibromyalgia yesterday as I've been absolutely wiped out for the past few days with fatigue - but I don't have the other symptoms such as headaches, IBS etc and it wouldn't account for extreme pain in fingers and deep heat so I'm still thinking RA unfortunately. Not that Fibromyalgia sounds like a picnic either but at least it doesn't erode the joints! Or maybe I've got both like poor Sylvia. Probably years before I ever find out though meanwhile for anyone not yet on DMARDs etc a large neat dram of whisky works wonders of an evening!
Just an idea..but it maybe worth asking your GP for the test for pernicious anemia as well. That can cause fluid retention, aches, fatigue and is often missed by GPs. If you lack the intrinsic factor in your body it basically does't work / store B12 and you feel dire. It is an auto-immune disease. The other test that's worth asking for is the Coeliac Disease blood test ttg anti bodies and enzymes and IgG as some people are IgA deficient. 1 in 100 people have coeliac disease in the UK, which is auto immune and is closely related to thyroid and arthristis. The biggest sypmtom is fatigue and it can also cause joint aches, inflamation and arthritis which then improve after diagnosis and following a gluten free diet. Worth also asking what your vitamin D levels are via blood test. It is a natural anti-inflametory in the body and low level reponses (40 or below) mean you are deficient. As it regulates the body and stops inflammation having a low level score may mean that you need some Vitamin D injections to boost your levels which may help at least with some aches and fatigue. Avoid also alcohol, coffee, cheese, chilli as these also inflame the body.
Thanks Fiona. I went gluten free when I had the diagnosis of RA back in May from my GP. It has helped with losing weight and former IBS has cleared but not with joint pain or tiredness. Now I've dropped dairy as well and was thinking this might account for the virtual disappearance of joint pain over the past few days - but I find I have started a period a year and a half after my last one - ie I'm post menopausal. Looked it up and it didn't look great I admit (endometrial cancer being the main culprit). Starting to wonder if everything is tied in with hormones for me but I have an emergency apt with GP tomorrow for tests so will ask her about the vit D test too if I remember!
I take diclofenac occasionally...and it sure does the trick to get rid of shoulder pain etc...It makes me gain 3lbs of water weight every time I take it...Recently though, I took it with just milk and no food in the middle of the night...my upper gut has now been bugging me for last 3 days..Like I need the extra issue ;(...
I was originally to take arthrotec ?, but couldn't afford the prescription, so I was switched to diclofenac (it was partially covered on my medical) . I live in Canada...
Im hypothyroid and am suppose to have mild lupus...My gran had RA really bad...
I saw your letter looking for people suffering from taking diclofenac...
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Hi it has been a long time since I posted.My mum passed away last week, I am now in the middle of a huge flare & was looking for any advise?
Trying to get a diagnosis, what can I do?
I am assuming this is a flare?
PERHAPS THE NRAS CAN ADVISE
I have severe pain but hardly any swelling.
