Hi everyone.
Does anyone have advice for generalised stiffness, obviously it's a big part of RA but my goodness my body feels like it's wadding through treacle currently, the level of stiffness is incredible. My joints aren't that painful but the effort required to lift arms or legs is awful.
I am having a flare as my throat is also very painful.
Just wondering if anyone has a tip for how to manage.
Thanks
I'd be interested in replies. The stiffness and feeling over 100 yrs old is the worst part for me. It's definately better the more I move, but the stiffness alone is exhausting. Certainly keeping as mobile as much as possible helps.
That's it I haul my ass out of bed to walk the dogs every morning and swim three times a week. I work and am busy but everything takes longer because you don't move fast.Apart from when I swim then I'm not too bad.... don't get me wrong Ledecky has nothing to worry about but I do 60 lengths in less than 50 mins and my time is improving....out of the pool it takes that long to get up and dressed. 🙈
I understand completely. I do everything at a snails pace! It's very frustrating! I swear the snails on my plot are laughing at me! Steroid jabs made things a bit better, but I'm not actually in enough pain to justify taking those. I don't know what the answer is. Sorry. 😥
Being fairly new to this, I haven't tried much yet, but found during my worst bout of stiffness, before I was diagnosed, coffee was the only thing that would get me moving, but I would pay for it later, by being totally wiped the next day! So keep it for when really needed. Then I was put on steroids which is like rocket fuel. Generally better in the middle of the day so try to avoid booking work meetings until late morning.
Lol. I live on coffee.... especially those cans of iced coffee. I'm definitely better later when the steroids kick in but I'm on quite a high dose so can't afford to put them up. Thank you.
Be careful with steroids it's a false type of wellness and in the long term they aren't good and are addictive. I'm not saying bad but just be aware of long term risks.
Ok
I just had to jump on here Medway-lady. I don’t know about steroids being addictive. I think there’s many of us on here (me included) would give their right arm to be off them and the other associated meds!
I never had pills for RA only the injection which wears off gradually until meds kick in, but an extremely high dose for AKI, it is why it's so hard to stop them. I was given a lot of info about them before taking and the risk of spontaneous broken hip, addiction etc but I'm talking about 16x 5 pills a day or a handful not the 10 mcg sometimes prescribed. They also alter the way the body metabolises food so almost impossible to diet on them. I saw Renal Dietician but I stress it wasn't RA. It took me months and months to stop and did it twice for well over a year and in RA as far as I'm aware it's a stop gap between medications not as a treatment for RA. They give them to try to shock the kidneys but it didn't work anyway. I gained over 3 stone and had moon face and it was dreadful. Now normal it is an experience I'd not wish on anyone. So in the right dose for the right reason be guided by your medical professional but ask why taking them especially if over a long period of time. If meds not working can you move onto something else etc?
Well, I have polymyalgia, not RA, and currently on a dosage of 2.5 mgs, I think that’s pretty good - all things considered.
when first diagnosed with PMR my then doctor said that the only effective medication for PMR is steroids.
Up until that diagnosis I didn’t take any meds of any kind. I hate taking the steroids and hope that one day (whenever that might be) I might be able to stop taking them completely 🤞
The dose you’re taking is low and if it’s the only treatment then addiction doesn’t matter. I don’t have any idea about Polymyalgia only RA where there’s a lot of medications. I think it’s risk v benefit and we can only listen to our medical teams. I can only write about my own experience of high dose steroids so if I were you although they have some side effects it must surely be balanced against not taking them. I was unlucky as it was a medication that caused my kidney injury but it’s rare and so I’d still have taken the medication as the risk was tiny. Sadly I was the 1 in millions that got a kidney injury but believe that every day we all run risks from so many different things and so don't overthink something that I can’t change. I not long ago got asked to do genetic testing for R A in the hope that one day a better targeted drug can be developed and people diagnosed earlier or the disease can be eradicated by genetics. I was so pleased to give the blood and let them look at my medical records etc in the hope that it will help future patients like perhaps my grandchildren.
It’s all so bloomin’ arbitrary. One day I might be fine and able to move freely - ish but the following day I can be stiff as a board, painful and creaking like an un-oiled hinge but having done nothing different. I don’t get it and I’ve had it for 34 years!
I don’t have any answers on how to manage. I’ve never been good at pacing myself and when I’m having a good day I do far too much and then pay for it -but some times I can do far too much and I’m fine so there’s no rhyme or reason. The horrible stiffness with RA is really hard to cope with and I guess everyone on here will have different ways of managing it but I haven’t really found one yet. Heat (a heated pad behind my back) and movement does help most days and I’m better by the middle of the day and onwards.
I’ve been on steroids for 34 years and they can cause a steroid myopathy (which I have in my thighs) which makes lifting my legs difficult and that definitely contributes to the stiffness. Hey ho, just another tear in life’s rich tapestry!
It’s like living with a ghost!
Yep, a bloody persistent one! 😄
stiff as a board, painful and creaking like an un-oiled hinge………..exactly!!!! So well said.
TBH…whoever finds the answer to that should bottle it & become a millionaire!
I find to keep stretching & moving but not overdoing things does help but doesn’t cure.
Re your sore throat….do you think you might have mild acid reflux? I sucked throat lozenges for ages for a sore throat, before my GP at the time prescribed a PPI & that really helped.
The throat thing is weird. It comes and goes. I could have it for weeks and then it's away. The doctor's have looked but my throat looks normal. When they thought I had stills disease it tied in with that but I think now they don't think I have stills.
I think it's just all part of the inflammation.
I suspect there is still a bit of my brain in denial, even after 7 years.
Try glugging Gaviscon ….ask your rheumy nurse if she knows anything better!
I had sore throat as an early symptom and they went down the acid reflux route without really thinking things through. Turns out the soft tissues around the hyoid bone can become inflamed like any other joint in the body. And because all the nerves and tissues are so close together in the neck region it can be hard to tell what is actually causing pain. Hence what is thought of as sore throat from acid reflux may actually be what ever arthritis people have.
For me, rubbing in Voltarol twice a day helped when I was in agony recently. The strongest one with 2.32% diclofenac. Expensive but I found a seller on Ebay who was doing the 100g tubes with a multi buy discount.
When really bad I'd take a couple of ibuprofen or paracetamol as well and it helped me get moving.
I did have, what felt like a bit of a sore throat in the left side a while back. Then it moved to the right. No cold/flu symptoms. Then it went completely but after having the flare in my hands, wrists, shoulders and knees, I started getting pain in the left side of my jaw but intermittently.
I suffer a great deal with stiffness slowing everything down and it has definitely been worse while waiting to start on abatacept which has been so delayed due to the shortage - should have happened in May but my first infusion now in 2 weeks time!!!! Trying to keep active with dog walking and exercise sheet devised by a friend of mine but it is sooo difficult
I wake up and my first drink is to get two frozen ice cubes from the freezer and add boiling water and drink. It’s a cocktail of fresh ginger, dried turmeric, black pepper and fresh lemon juice. All out through the blender, pushed through a cheese cloth to strain and freeze. It cleans the liver, bowel etc and really helps with inflammation. Drink through a metal straw and clean your teeth before hand due to the lemon juice and its acidity. You can also make this recipe without the lemon juice. Black pepper is essential to help the body to absorb the turmeric. I take magnesium an hour before bed which also helps. I also use a gel called bio freeze that my chiropractor uses. I have it really bad in my hands and wrists and I have exercises to do daily and have. Little stress ball that I squeeze daily. They were only a couple of pounds from eBay. Definitely getting moving and stretching has helped me. Xx
I’m having the same type of flare, but it’s very painful right now. I’ve had RA since 2017 and have been on many biologic medications. I just stopped Enbrel so I can have a Rituxan infusion. It worked a couple of years ago, so I hope it works again. Prayers for everyone.
Definitely hoping it works for you. I'm on the biologic merry-go-round too.
I find hot shower in the morning, stretches, movement. I am about to embark on a journey re nutrition. As I am now on a mixture of medication to help.
Oh I’d pay a fortune if it solved the stiffness. I have areas of fusion due to having AS, my sacroiliac joints are completely fused, knees subluxed, all my toes etc. I recently found an app that calculates your mph, I was gutted that mine was only 1.4mph, when most folk do around 3. It made me quite tearful, especially when I mentioned it to hubby and he confirmed I am slow. He has the patience of a saint. I also have severe adrenal insufficiency due to steroids, diagnosed after a severe stroke, due to producing no cortisol, as steroids have atrophied my adrenals. So I would always urge people to try everything else before steroids, I have diabetes too due to steroids. When I wake, my battery is flat, as it’s cortisol that causes you to wake up ready to tackle the day. I have to wait 2hrs for the artificial cortisol to kick in. I do daily stretches to try and prevent worsening of the fusions, but it can take me 5 mins just getting back up off the floor. I’m 59, but feel 89. My rheumatologist says that a change in meds won’t improve my stiffness, and that doing my daily stretches is the best treatment. I have an identical twin, who has no health issues, and it’s heartbreaking to look at her whizzing around, whilst I hobble and struggle with weight due to meds. We no longer look identical. She has the AS gene like me, but hers has never been triggered. I need 3 in 1 oil, as I’m turning into the tin man. Looking ahead, I think I’m going to need to move to a bungalow, as stairs are challenging, and cannot do them without a handrail. Good luck finding something to ease things for you. 🤗
Thanks for taking the time to reply. I feel like a tin person too. I'm slow going up stairs but moving isn't really an option. I do keep moving and going and TBF most of my friends think I do too much but it's easier to keep going. I'm going to look into your app....just to see.
as paiful as it is you need to keep moving, try moving , whiles trying to move and lift your limbs do deep breathing. in through nose and out through mouth. do deep breaths the more breaths you do take deeper inhal e and hold longer and breath out slowly. do 10 arms and 10 legs. keep moving you have to.
found my cure for this. I had it exactly as you described. Check with GP first but after 2 weeks this cured it for me. Reduced now to 1 a day and no longer suffer so now remain active and this helps too.
Curcumin C3 complex 12000mg from Simply Supplements . It’s a Turmeric extract.
No other Turmeric worked for me. So don’t waste your money trying. This may be expensive but for me it’s worth every penny because it works.
I've tried turmeric before but wasn't convinced... however I'll look into this. Thanks
I would urge anyone considering turmeric, to research as it interacts with many meds. I purchased a pure turmeric that is only available as a prescription in Australia. I was assured that although you couldn’t take with warfarin, it was fine with clopidogrel. It did wonders for the inflammation, but I was literally covered head to toe in bruises. It uses the same enzyme to metabolise as almost 50% of meds. That results in it either inhibiting or enhancing the effect of the med, in my case it enhanced leading to toxic levels. With other meds it can prevent it reaching a therapeutic level. People seem under the misconception supplements purchased over the counter are safe, but they do interact with meds. Turmeric also interferes with diabetic meds. Anyone on any medication should check a supplement is safe to take with their currents meds. I no longer take sales reps information as accurate, and research carefully before purchase.
I should add that many of rheumatology patients also use PPIs which also interact with Turmeric, and result in increase production of stomach acid. It also shouldn’t be taken with nsaids
I had this and adalimumab stopped it. I’m aware the same drugs don’t work for everyone and ones that work for you won’t always do so, but for now I’m flying adalimumab’s flag.
My non-medication tip is Pilates. My physio-led Pilates is a game-changer for stiffness, I highly recommend looking into this.
I started some yoga a few weeks ago in the morning. It was really helping to get me moving and lessen pain. Unfortunately life isn’t that straight forward though is it. Because I was finding it was using up some of my valuable energy that I need to use to live life and I get so much more tired in a flare. I want to get back to the point where I can do it several times a week again - because it felt so good. But I guess patience is needed
When in a flare I've learned the hard way it's better to call the RA advice line speak the RA nurse about solutions. In my case flares and symptoms get worse requiring steroid injection to halt what's going on. I either have an intramuscular steroid or last time I had a steroid injection in my knee. The benefits of these few and far between injections is they end the pain, loosen me up, give me few weeks of feeling relatively "normal".
I'm not on steroids regularly as some are for differing reasons. Thing is we're different so why I suggest speaking with your RA nurse. I also avail myself of massages , uses ice packs in hot weather , heated pads in cold weather to try to relax the muscles.
All the best
The stiffness is I believe because the fluid between joints thickens so we get stiff, it might be a sign your meds aren't working as well as they might. It wears off but worth talking to your team about it.
I too feel I am walking through treacle. When I was on methotrexate the first sign I had that it was working (other than my thyroid gland working again) was that I didn't feel I was walking through treacle anymore! Then I started feeling ill on the methotrexate and had to stop. I have been a year without any medication and that treacle is getting thicker.
We have a flock of chickens (38 including the latest chicks which have just hatched) so I have to move around in the morning and use that as my stretching routine; stretch up to unlock the doors, sideways, diagonal, walk backwards... the only think I have to make sure I don't do in the morning is bend over as that sets off my low back pain and/or sciatica.
I find that by the time the evening rolls around the treacle has dried up and I am walking and moving a little better. Just in time to go to bed!
Like you i feel stiff and i struggle to get about. My fingers and thumbs are the worst though. Hugs darling.
Yes - yoga... every day... From the moment I wake up... I stretch.. doing the reed pose.. twice.. and you'll not even on the second go, you are more supple.. the stiffness (which I have all over for various reasons) lessens.. And then after my meds, break, hydration etc, I do a full Hatha yoga session, at home.. It is ESSENTIAL for my daily life and health.
Oh and drinking 3 litres of water...
I have Sjogrens and lupus, osteoporosis, widespread inflammatory arthritis and the whole of my spine, lumbar, hips etc is in a very bad way, along with all my connective tissues.. due to the aforementioned connective tissue/autoimmune diseases. I have been doing this since 21 yrs old and I'm now 61 and in a right state.. (cancer, organ failure etc) but doing this every day... is clearly the only way to rid stiffness from the body... I'm pretty sure I have scleroderma too but too complicated to go into.
That is my advice for you - well, daily yoga.. even if you can only do the reed pose and a few others (takes a couple of minutes so it's not about not having the time - for anyone - I do it in the bathroom sometimes, knowing I have an appt to get to etc), PLUS - 3 litres of water a day, tons of omega 3(!!), high grade collagen(!!) (Bare Biology for both), and an excellent diet full of veg, fruit, fish, wholegrains, whole rice, nuts and seeds etc.. It's the only way I've managed to keep going since being born with much of what ails me..
All the best to you and hope this is helpful
D
I've had what was initially called "seronegative" RA from the age of 48 . I'm now 83 . On several occasions the "seronegative" diagnosis has been questioned by varying rheumatologists , as my hand and feet joints are particularly crooked . To be "seronegative" , I was told in the early days , was better than the other, "seropositive" . I've had knee , ankle and elbow replacements. So not convinced.
Now they question if I was correctly diagnosed , but nothing has been changed . I'm on MTX and sulphasalasine , basically . Never been offered biologics or Jax inhibitors , considered not bad enough , considering the side effects of these drugs .
I was seen at the RNHRD ( affectionately known as the MIN , ( Mineral Hospital for Rheumatic Diseases ) initially. Now integrated with the RUH , Bath .
I used to be seen fairly regularly by my consultant , then by different practitioners , but not now unless I ring up . Consequently, haven't been seen for some years .
Like most sufferers , I'm stiff in the morning, ease off during the day. Some days are worse than others , especially if I "over do" it . Flares are fairly often but just when I think I'll ring up , they improve .
I take 2 paracetemol plus a codeine at night . Paracetemol only during the day , up to 4 times , if I'm really bad .
Not sure what other people find to keep them going . Suggestions welcome .
I think biologics have less side effects in case you ever want a change. Wow! Thanks for posting. 35 years with RA and still going strong! Gives me hope.❤️
Thank you ! 😊 If I ever get a review I'll ask about them .
Try a warm electric hot water bottle; you plug in for a few minutes and can even get ones with straps on to wrap around stomach for achey back/limbs etc. I would only use for stiffness not hot swollen joints (ice packs for them) as would make things worse. I got mine off eBay for about £11 but don’t know if it’s ok to post a link here.
Also longer term I love swimming even tho they closed our local pool due to Covid and I now need to go further afield. I am trying to build up v slowly again due to other health issues but it gives me an enormous sense of well being too.
. I am currently on a tapering course of steroids which has been marvellous following a flare after no RA meds since September but I am well aware of the issues with them.
A lot of the time it’s swings and roundabouts with this. Good luck and hopefully you get some respite soon. I haven’t been on this site in ages and have had RA for 7 years now but good to know you’re all still supporting each other.
PS I think someone else said it too but like other auto immune diseases it’s the sheer unpredictability of flares, nothing you’ve done wrong or right, that gets to you: I was so well controlled with Benepali for years that I’d forgotten how painful the things are. Hope yours clears soon even tho not the painful type, they’re both a pain!
I'm definitely onboard with the swimming. I go three times a week, 60 laps of the pool if I have time. It's been brilliant for sore joints and yes helps with the stiffness. My kids bought some of those reusable heat packs on holiday.....but now I'm not sure where they are. Ill have to find them.
I'm definitely onboard with the swimming. I go three times a week, 60 laps of the pool if I have time. It's been brilliant for sore joints and yes helps with the stiffness. My kids bought some of those reusable heat packs on holiday.....but now I'm not sure where they are. Ill have to find them.
sorry wilbert, I did reply but it appears to be lost in the ether? I’m not on here that frequently maybe why? Or I did something wrong, more likely.
60 laps puts me to shame lolz: I did 20 laps, 4 times a week in my small pool which averaged a mile a week, go me eh?☺️!
I love swimming, 🏊♀️ it’s such a nice chilled thing to do & totally puts me in the zone. It’s one of life’s little pleasures for me.
Couldn't agree more swimming is lovely. No one can contact you and I find I have to concentrate on counting the laps I can't even overthink things either. 😍
Absolutely the same, so good for you ☺️
Hi Wilbertjellyfish
I get totally where you are coming from. Having had sJIA for 51 years, since the age of five and have a long list of diagnoses. I've tried most DMARDS and NSAIDS. At present, I'm on a low dose of 5mg prednisolone, but I'm unable to drop it any further due to the fear it may cause adrenal insufficiency. I also take the biologic drug etanercept and have done so since 2008.
For me, exercise and Doterra lifelong vitality supplements and essential oils are the two things that help me through it. As well as a decent diet. I don't eat meat and eat loads of veggies.
Stretching before exercise is key to keeping your tendons and ligaments supple, or as supple as they can be with how the disease affects us. Exercise routines and other forms such as Qigong ( form of tai chi) really help me keep my muscles as strong as possible and therefore protect the joints. I know I feel more supple after doing the stretches and exercise routine each morning and if I don't do them for a few days, I know about it.
Although I've had multiple hip replacements I've held off a reversal shoulder replacement for 14 years, through exercise and building up the muscle. It's really difficult but it definitely helps. I also do Qigong, which is brilliant for the body and mind and has given me core strength. I tried yoga, but as I have quite restrictive movement I found Qigong easier to do.
In 2017 I got to a point where I was really struggling with flares, stiffness and infections.
I had always tried alternative meds throughout my life, but had never found anything that worked. I was desperate for something else to help and after attending a class of Doterra essential oils I asked my consultant if I could take Waterfall d mannose to help with the water infections, Pure Therapeutic Grade Essential Oils from Doterra and their lifelong vitality supplements. I gave her the ingredients and she was on board with them all. They have definitely made a difference to my inflammation and sleep. They seem expensive but due to their potency, I only need one or two drops of the oil, of which there are a range depending on whether I use them for infections or inflammation. The supplements range from £2-3/day, depending on what dose you take. I forfeit other things to enable me to have my oils and supplements.
This coupled with the pharmaceutical meds and exercise, have enabled me to be the best I can be. Don't get me wrong, I still have inflammation and was diagnosed with AS in 2021 but I try and discipline myself to stick to this as I know it helps me given the list of diagnoses I have.
I've nearly finished writing my book on how sJIA has affected me to try and help others living with inflammatory arthritis. My parents were very strict with me when I was a child forcing me to do exercises knowing that they would help my joints, and this has stayed with me. I have dedicated it to them.
Apologies for the long post!!
I hope you find something that works for you. It's awful having stiffness and restrictive movement, but you'll find lots of information on here and eventually find a combination that works for you. x
In the summer I swim first thing in the morning. Winter, I take a bath. I think this helps by lifting my spirits and by relieving the stiffness most people get rather than helping with the actual inflammatory stiffness. The only thing that truly helps me is the medicine. I feel stretching helps keep me mobile. Your swimming is amazing! So far! Way to go!
Olive oil
Newly diagnosed ... A bit down really
Hand Corrective Surgery
Vitamine C and a flare-up?
Hands
