Hi feel bad moaning in here I know people are more ill than me im sorry to moan I've wrote a post out 3 times over this week and not posted it but today I can't continue i must be getting on hubby and kids nerves thankfulky they supports me wished I wasn't posting wished it stayed in remission was great for 3 years on toclizumab this pain is horrendous even moving bed cloths of its hard painis bad shower is a nightmare need to wash my hair but physicallly cant manage it pain and stiffness its hardwork its like nothing I've experienced door handle sent me over today kills me to type its going on 6 weeks all my joints are sore except hips and back. I have a appointment at clinic on Monday really can't come quick enough back story gp gave me a steriod injection on 9th march we thought it was RD flare up it's symmetrical in my joints started in my hands and wrist seemed to have spread throughout my joints and got more angry steriod did not touch me clinic think it could be osteo as all my bloods are within range trigger finger is adding to it rang gp again about pain nefopam prescribed it didn't work she did say about morphine I was scared of how strong morphine is said I'd try nefopam I have dihrocodiene i use when in pain but its not touching i take paracetamol regular Not suppose to use anti inflammatory I have ckd ... anti inflammatory are a little better for me not totally then but I won't take them stupid gp says it always the bad thing that are good for us like were taking about cream cake she as no idea what pain I'm going through gp says use voltarol it's is not the same pain as the TV advertisement for voltrol it will not sort me out its so much more I've got heat and cold spary and creams nothing works iced peas is best but have pain in all the joints mays well put my whole body in walk in freezer and live there rang gp again third time I feel like I'm being a nuisance at this point and i feel like my pain is miminzed by gp and not took seriously gp prescribed amtriptaline on a third phone call over the phone to be used twice a day but at least im getting some sleep now then she says I'm only 57 so didn't want to give me morphine im so upset my age is used against me didn't know pain is managed by our age im not looking to get high or off my head alls i want is pain under control nothing works ice helps a bit seems to calm it down short term I have 4 bags of peas but i have more joints pain worst are my hands and wrist I can't do the basic stuff when I wake up its horrendous I've never been in so much pain in my life its never been this bad I can't even do basic things morning time are a nightmare and it continues for hours it eases of slightly after I took my second dose of dihrocodiene but continues all day long really i I can't cope with no more I dread waking up knowing my day will consist of angry pain ive caved and took some ibuprofen how do I get my gp to.listen ? some stronger pain relief bebit morphine or what ever else wished it would just stop wished I want posting a moan post I want it gone. Was really debating posting people in here understand .hope you all picked winner's today the national .
Pain on another level.: Hi feel bad moaning in here I... - NRAS
Pain on another level.
Oh you poor thing, I do hope you can get some relief soon. Sending a gentle hug 🤗 x
i’ve just come out of a bad patch, and it’s on,y now that I realise how bad it was. Can absolutely relate to bedclothes! I wasn’t able to pull the duvet up over my shoulders when OH nicked it, but at the same time couldn’t cope with weight on my feet. Had to wake him up!
However, fingers crossed this is all in the past. Stopped Tocilizumab mid-Feb and started back on Enbrel. Hopefully there will be a new drug for you too!
Living hell isnt it im glad your bad patch is improving slightly hopefully back in remission soon .
Hello - Do I understand correctly you were on Enbrel before and have restarted it recently ? If so, how long were you on Enbrel for and why did you stop using it? My rheumatologist has told me he couldn’t allow me to restart Enbrel once a biologic stops working. So I am confused. I am on Tocilizumab, have been for 2 years but it is not controlling the RA well…. Am in extreme pain, my whole body, my shoulders, wrists, fingers and neck and back especially. I can hardly use my hands which makes life really difficult especially when one lives alone.
I was on Enbrel for about 3-4 years until got an infection and had to pause taking it for a few weeks. When I started again it didn’t work. My rheumy told me that I had probably developed antibodies to it and that maybe I could try again in a couple of years. In the end I was in such a mess after a year that she agreed to give it a go.
During that year I tried Amgevita amd Tocilizumab- neither of which worked.
Thank you for your rapid reply. I was on Enbrel for 14 years then had 2 knee replacement operations within 6 months of each other. It was after the second replacement that it stopped working. So had 2 other biologic which didn’t work. Baricitinib and another one before that (an infusion ) am now Am now on Tocilizumab (started it in March 2021) but it’s not really working. I had a hip replacement on 1st February. The hip is fine it’s just the rest of my body that’s falling apart.
When I suggested to my rheumatologist we could restart Enbrel he said that would not be allowed…
Where abouts in the UK are you? I live in the Midlands.
I’m not in the UK, so that might be the difference. I live in France.
Maybe ask if you could try the biosimilar?
Lucky you! They are rigid in the UK…. Once you’ve tried one biologic they apparently can’t prescribe it again. They want to try other drugs…we are Guinea pigs. The biosimilar (benepali or something like that) doesn’t work as well according to people who were switched onto this from Enbrel because of cost. How long have you lived in France and in which area do you live? I am French… Bonne journée.
I now live in the Jura, and have been here 15 years. I have double nationality.
Since I was bought up as an NHS baby it hurts me when I read of all the problems people are having. Leaving the NHS and my wonderful rheumy was the biggest hurdle for me in moving permanently to France. And now is the reason I will never move back!
How wonderful! You certainly get better medical care in France, overall. Sadly the NHS is on its last leg…. Has been for quite a while. Much money has been abandoned is still wasted on ‘managers consultants’…. and the likes. The NHS was better run before such useless positions were created. It’s the system that is not working in favour of the patients, not the staff. Very sad and infuriating.
However, by and large, the doctors, nurses, paramedics etc. work very hard trying to cope with a large number of backlog appointments.
I was born in the Champagne area…. So not too far from the Jura. Wish I was there now. Au revoir. x
just sending a hug as you have a lot going on let’s hope MondY you get heard and a treatment plan sorted. I have to say with all this rain lately my OA has been kicking out a bit more pain than normal usually stays quiet as lots of other issues x
It feels more than weather related if it was weather related I mays well be out of my misery couldn't go on like that for the rest if my life.
My GP gave me morphine when I had a RA flare from hell. I was in my mid-sixties at the time so not sure why you can't have it. I know how you feel as I had a huge multi-joint flare around 8 years ago. As if that wasn't bad enough I went and got me a lengthy bout of acute sciatica on top! 😭 Talk about pain!!...I couldn't raise my arms to the horizontal , put any pressure on my shoulders, my wife had to help me up from sitting, and on times, support me walking to the bathroom or wherever. Never mind shower, I couldn't even wash my hands properly due to the pain. ...nightmare!! I look back and wonder how I survived it all as I don't think I could go through several weeks of that sort of pain again. Wouldn't take NSAIDs due to heart issues. Tramadol/paracetamol combo was no help, Oromorph was about as effective as a bottle of Night Nurse, so GP prescribed morphine sulphate tablets for the pain along with diazepam as a muscle relaxant for the sciatica, which did help though not as much as I hoped.
I had this flare due to stopping meds (enbrel/mtx) after a serious infection. A couple of weeks after restarting mtx the flare gradually calmed down.
Hope you get some relief soon.
O don't know why it such a fuss to give me stronger pain relief alls she kept saying was im to young for it shower is hard everything is impossible when I wake up goes in for good amount of hours my hair is a mess needs a good wash hopefully get sorted on Monday.
Snap. My year from hell started after stopping MTX/Enbrel because of an infection! When I restarted it didn’t work, and then tried two different biologics which also didn’t work. My rheumy reckoned I had built up antibodies to the Enbrel depite also taking MTX.
Finally she suggested re-trying Enbrel as it had been a year (almost to the day) so might be ok. And 6 weeks in it is working. I look back and am not sure how I coped either. It’s only now I realise how bad I was.
Luckily we forget the feeling of pain and just have the memory that it was bad!
Glad that Enbrel is working again. I was told to stop taking it by an orthopaedic consultant because he thought it was the main cause of the infection (septic arthritis in hip) that I mentioned above and in previous posts of mine as you probaby know. Pity as Enbrel was a wonder drug for me and I experienced a few months remission while on it. That septic arthritis was up near the top of the richter pain scale too, though did ease some when off my feet and soon after surgery a few days later.
I don’t want that thought in my head!
But I hope you find you new Enbrel.
Doing ok on Baricitinib but Enbrel was a wonder drug for the few months I was taking it. Hope it keeps working for you.
Enbrel was brilliant for me for years ( I had 6 months on Benepali on cost grounds but it was no good so I went back on Enbrel) . Then in May 22 I caught Covid, stopped Enbrel, had a massive RA flare, eventually restarted Enbrel and it didn't work. As I have other auto immune problems I was started on Hyrimoz to help them as well as RA. No effect, caught Covid again after 6 weeks so stopped. Restarted 6 weeks ago now and no effect, can't tolerate mtx or leflunomide so living on nsaids and paracetamol and hoping it will kick in soon. Would I be better to try Enbrel again, it was so good for so long?
originally my rheumy said I would have to wait maybe 2 years to try it again to give time for my body to clear the antibodies. However after trying and failing on two other biologics she suggested we give it a go. Which seems to be workimg (fingers crossed). I restarted nearly exactly a year after I stopped.
Thanks for that, it's been less than 5 months since I stopped Enbrel so I had better persevere with Hyrimoz and hope it starts working
I am a morphine taker but not for RA - OA is just part, I have degeneration in my neck and shoulders . I take Morphine Sulphate and kept to 8 mg then upped to 10mg - I also take paracetamol and it dulls the pain rather than stop it totally. Can't have NSAIDS as they can cause bleeding and am on blood thinners for my heart. Other options are Gabapentin at high doses, with side effects - I also take Lorazapam, my body had got used to Diazapam. Really my pain meds reduce from unbearable to annoyance.. Good Luck.
EDIT. I am 77 and prescribed morphine but, I was Opioid tolerant after years of taking Dihydrocodeine..
Oramorph did nothing for my pain either when I had the flare from HE double L back in 2015. 🤨🤷♀️
One thing it did do for me and that was bung up my digestive system. MST's made it even worse. As if the RA and sciatica weren't enough to put up with!
It's hideous and I really feel for you.
Dont ever think you are annoying the Dr's It's their job, Its so easy to forget what its like to be in extreme pain so some medics need reminding and there's nothing wrong in that. In fact if you've never had RA or any kind of arthritis its hard to understand just how painful it is.
Good luck for Monday and insist you need something.
We are always here and if it helps in any way just let it all out, we understand x
Take care
Thank you your message really means so much .❣️
Gentle hugs sweetheart. It’s a rotten time when your med stops working for you and I hope you can start something else, but if it’s not deemed to be flaring, what to do? I hope there is some plan sorted on Monday and you can start to improve. xx
I really don't know will find out tomorrow so annoying when I was doing so well.. its a battle at times who knew how painful and uncomfortable this disease could get. Not me. .hope your doing good. ❣️
Thank you Vonnie, the RA is behaving but the immune and osteo could do better but it’s not a complaint. I hope things seem much better for you after tomorrow at the rheumy and I hope too your little pug is keeping you company and giving lots of gentle snuggles and behaving himself! What is his name? I’m sure you saw this adorable Snoopy lookalike on the online news this week. What an adorable dog! Sending you my very best for tomorrow. 💗 xx
Hope you can get some real help on Monday and relief soon from your awful pain.
When I’ve been at my worst I’ve not even tried to shower but used wet wipes to freshen up and dry shampoo for my hair. Not ideal but better than nothing.
So sorry you’re suffering like this and sending you gentle hugs.
Shower a nightmare can't even grip the soap going to have a go at washing my hair. ❣️
Me too .. Simple wipes and Batiste saved the day for freshening up. x
So sorry to hear you are going through this. I have had something similar in the last few weeks. I was very upset when I saw a different GP and they agreed to give me a prescription for a 5mg Buprenorphine patch.
It helped to manage the pain put certainly didn’t take it away. I removed it after the 7 days (last Saturday) and it seems to have got me through the worst part as I’m back to managing with my normal painkillers.
GPs are reluctant because they see it as a ladder to even stronger drugs if you start too young. I am only 45 and my GP last Christmas refused Buprenorphine (Rheumatologist recommended) and gave steroids instead (which I was happy with).
I had got to the stage were I said to the GP the pain was affecting my mental health which has been pretty good until recently. He was sympathetic, I felt.
Is there a different GP you can speak to? Hopefully your rheumatologist will help you on Monday but for me it was about having a contingency plan for flares and being stuck between the rheumatologist saying no steroids and GP saying no stronger painkillers. I am still even considered writing to my GP, Hepatology and Rheumatology department telling them they needed to come up with an agreed plan because it is unacceptable to leave me in the level of pain I was in.
I hope the pain eases for you soon x
I was given them patches at the start of RD 6 years ago from a older gp she now retired now seems all.these new dynamic young GPS are against pain relief will see what is said Monday ❣️
I am so sorry you are having to go through this Vonnie and hope somehow that they can come up with a plan for you that will address and relive you of the pain you are in. I wished that GP's, Consultants and all involved in our health care would communicate more with each other, but that's another whole story. Take care and fingers crossed for Monday xxx
Hi My GP doesn't prescribe for me it my RA consultant or RA nurse . I've had a few flare ups and had steroid injections but now on Methotrexate, Sulfasalazine and Hydroxychloriquine with pain relief if needed. Never Morphine etc thank goodness! They have helped me and most days manage fine . I've struggled with door handles and just being able to lie in bed and sleep. I hope you find something to help!!
Oh Vonnie I've been where you are and had the pain and not able to shower or do anything as it was just too painful. The only thing that helped was a 2 week course of 30 mg of Prednisolone tablets. I felt like a new woman but it was short lived and pain started again 4-5 days after finishing the tablets. I was given morphine for a broken vertabrae it helped that but didn't do much for the RA or osteoarthritis pain. I had Zomorph and oromorph them Nefopam (I can't take naproxen). I'm now on pregabalin and a buprenorphine 10mg patch which is helping. I was onto my GP every week for weeks apologising all the time so don't worry about calling them it's the only way to get the help you need. I've cried on the phone and face to face to the doctor
So don't worry about breaking down with them either.
Ive told them I no longer want to live, which I didn't. I posted on here during my worst moments and these wonderful folks helped me through it. I truly hope you get relief and the help/ medication you need. You will get through it and I know you can't see that at the moment but you will. Sending gentle hugs. Keep posting on here it really helps. X x 🌹
Ps I got bed bath wipes and hair washing caps off Amazon. Look for Drench and you will see them. The caps are good. O also lay on top of our quilt and used my granddaughter's single quilt which wasn't as heavy to move
X
Wishing you a productive rheumy appointment tomorrow. Hopefully both some immediate pain relief (at least to manageable level!) and longer term medication to damp everything down.
Let us know how it goes.
Xxx
How awful. I feel for you as you’re in so much pain- I’m so sorry.
Being practical, have you tried these for your hair? They also do enormous wet wipe kind of things which are amazing too. Hair ones, just stick on your head for three minutes and it’s done!
Fresh Wipes No Rinse Shampoo Cap with Pro Vitamin B5, Aloe Vera, & Conditioner | Microwaveable Shampoo Caps for Elderly, Post Surgery, Disabled, Festivals, Campers | All Hair Types amzn.eu/d/3vYAtLa
Thanks I'll have a look at then you sent me ❣️
Oh Vonnie, I was cringing reading your post, I'm so sorry to hear you're suffering so much. Door latches and tap heads were a no-no for me (hubby changed the bathroom sink tap heads to lever heads as I couldn't turn them). Frozen peas are OK and cold running water used to help with my hands and wrists. I really hope your rheumy can sort something for you on Monday. xx
Aww bless you darling, you are in a bad way, have you thought about ringing 111 this morning to see if you can see someone today as it sounds to me like you do need to see someone darling. You are the same as us all with our pain, no ones person's pain is any worse than another we all suffer the same. So with that said i am sending you gentle hugs and think about ringing 111 darling. xxxxx
Probably more to do with your chronic kidney disease morphine can be very toxic ask about alfentnyl won't last as long but your kidneys can deal with it
I am sorry you are struggling so much. Are you still waiting for a diagnosis from rheumatology?, it may be useful for them to see how you are and examining the painful joints. Unfortunately my experience with rheumatologists will issue medication that will slowly w the progression of the disease, but leave the analgesics to the GP to manage. One of the neon ways of knowing if it’s an inflammatory arthritis or osteoarthritis is how it responds to movement. Inflammatory arthritis is worse on resting and improves with movement, whereas osteoarthritis and mechanical causes are better at rest and worse with movement. OA also doesn’t cause the same length of stiffness in the mornings. You can use this knowledge to argue if they feel it’s OA. Also my gp said when I complained of both feet hurting, with no trauma, that when it’s bilateral it suggests it’s systemic. I hope they are able to help. I had a stroke 5yr ago at 52, and could no longer take nsaids. I was waking every night in severe pain. My gp prescribed me butec pain patches, initially 5mcg, but have needed it increasing twice over the 5yrs, and now use the 15mcg patches. I still have Tramadol I can add to that, but don’t use it often. The other thing I find helps is a muscle relaxant, baclofen. I have AS and many tendons have calcified and results in muscles not being able to relax like they used to. Hope you get answers soon 🤗
you are not alone. I have 3 lots of steroids by IV and that has nit worked. I am now waiting to have an assessment next month for IV medication. I am crossing my fingers that works so I can get my life back. Hang in there.
Oh my, I've been to that place too with the bedcovers etc. Complete agony. Hold on in there til your apt when they hopefully will give you something else. GP's are notorious for not giving out strong painkillers...I didn't get anything either when I had an episode. It depends on the surgery. But the clinic should understand better hopefully. Thinking of you.
It sounds like your immunosuppressants have stopped working, so you need to change to a new one. Have you contacted the rheumy helpline? Your GP can't change your RA drugs.
Have you tried CBD oil drops or gummies for the pain.??
Will help and it is not addictive .
Could you have Fibromylgia, it is very painful.
No I don't have fibro I have rhematoid and maybe osteo I've tried cbd and full spec plus real thc none helped.
I take oxycodone when pain is at its worse it only takes edge off. Iv had just over week of horrible pain in my back. Iv had some X-rays no results yet. Never show anything but stable fractures! I’m going to request a scan as I think it could be stenosis. I have osteoporosis. It’s absolutely awful so I really get you. Nothing consoles me during these times I never know if it’s a flare or something else. I’m so tired. Iv taken an extra 5 mg Prednisolone this moans will again to see if it’s bucket over filling with goolies. I hope you get better soon. Who knew life was gonna drop this on us xxxxx
Oh god you poor thing 😔 you must be going through hell!!!!!! Gp needs to listen and take everything on board. Demand morphine patches i had them for a long while in my 40's given to me no problem and massively helped so age has nothing to do with it all about cost lately but push push push for it don't take no for an answer you need it end of!!!! Sit in the office cry let them see exactly how you are suffering they need to help you with this and they can sometimes if your too nice and just accept things they will leave you behind thinking you can manage so really express yourself be assertive and good luck with it. Hope you get relief soon. Pain is so consuming just horrendous. Take care x ❤️
I’m sorry to hear you’re going through so much pain Vonnie! I know what it’s like when you can’t even stand the pain of bedsheets … horrendous. It’s not right for you to be left in so much pain … GP needs to be told just how desperate you are for relief. I’ve been lucky enough to find relief from a steroid injection but it needs to be full strength … the one the rheumy nurse gave me made no difference at all . I hope you get the help you need … but I’m the meantime , try to remember this will not last forever … as testified by everyone on here .. it does eventually pass or a treatment is found and things will get better . Just hang on in there! Xxx
Bless you you are struggling so much and need your medication reviewed, fingers crossed 🤞 you will get the help you deserve on Monday, will be thinking of you and sending gentle hugs 🤗 xxx
Awful for you, the pain is indescribably dreadful, hope the appt with your consultant finds a solution. 🤗
You really are in a pain trap, hardly seems fair.. I have Liquide Morphine Sulphate and am 77 - I do not have RA but OA and severe Degeneration in neck, cervical spine and shoulders, Morphine is about all I can have. Anti depressants I can't have as I have heart problems and can worsen my AF - I can't take NSAIDS as I am on blood thinners.. Tramadol and Codeine types don't work anymore for this pain, so Morphine with small dose Gabapentin.
I know that shower feeling, it's hard and it's a dread when you need one. Vonnie10 I hope you get proper pain relief and soon.. best wishes and good luck.
Never feel bad about posting here, we've all been there, let us know what happens Monday. 😘
Hang in there Vonnie, not long till mondays appointment. I've been there very recently, 3 months on no medication at all, pain beyond what I could cope with. Finally rheumy team agreed for me to try a JAK Filgotinib....felt improvement within days, hope it continues to over power my RA. Not long since being in unbelievable pain, but strange how you forget how bad it was even when you get a small improvement.
Stay strong...you can get through this and there will be better days ahead 🙏
😥😥. I have a small amount of what you're experiencing and know how much this impacts on me. I hope someone finds a solution for you.
Gosh ...Thinking of all of you who are struggling. I thought my pain was getting worse, but not as severe as you people.
Take care and don't let the .. .... get you down
🌻
Vonnie, what are you on to control your RA? Is it possible for you to get appointment with your Rheumatologist? Even a video call?
I don’t understand why at the age of 57 your GP won’t give you morphine, surely you need the pain controlled at least until you get your disease under control?! This is awful for you, no-one should be left in as much pain as you’re experiencing.
I hope you get something to help and the sooner the better.
Sending a healing hug. X
I understand your concerns because, like many others, I too am experiencing an incredible amount of pain, in my whole body… especially in my hands, wrists, shoulders, neck, back. I have great difficulty getting showered and dressed (many days wear my pyjamas all day long) and can’t cut, peel etc. Vegetables. Living alone makes it really frustrating and depressing at times because of the intensity of the pain, So I send you kind thoughts and do hope you can get some help from your rheumatologist. Unfortunately most GPs don’t really understand RA. Best wishes,
So sorry to hear this, when I was first diagnosed in 2013, my gp told me my 82 year mother looked fitter than I did. I could barely stand. On that day I said to him do you know what doctor, I feel so ill I would admit myself to hospital TODAY! Thats exactly what he did. I know it's drastic, but I personally felt it was my best option. I'd seen the consultant 3 months before he took a two second cursory glance at my knees and wrists, barely looked away from his computer and later accused me of lying. It was a good job I had admitted myself as my inflammation level was 140% off the scale and I would have suffered the consequences. I would seriously consider this, but it's your choice.
I was on Enbrel for a few years 1 injection a week, but it stopped working after I had a op on my hand so was changed to humira that didn't work for me so was put back on Enbel same dose but split into 2 injectons a week that worked until they swapped it to Benipali. So at least they used to retry Enbrel but Now on Baricitinib a tablet . Works really for me. Maybe ask to try something like that,its not a biological but A Jak inhibitor.
So sorry to hear about your pain,hope you get sorted soon
Vonnie, poor Vonnie, you need to see your Rheumatologist! They are the Specialists, who Know your illness & alleviate the pain. It may be that you will have a different medication, or be referred to a pain clinic, I don’t know, but they will do their best for you. Ask for a review with the consultant.
Hi a little update first thank you for all your lovely kind message and I'm sorry anyone is struggling after reading some messages it made me sad that's others are struggling.. I thought I was having a scan yday but it was nurse assessment she requested a urgent scan should get it next week need to see if it inflammation refereed to OT she agreed that bloods dont always match up with whats going on just hope and prey that doctor changes my medication who knows 🤯🤯 I can't figure it out confused by it all if I'm honest nurse wrote to gp about pain relief havent followed that up yet little scared of stonger pain relief was fun and games trying to get ready yday don't know how I managed it shoulders are bad was hard work but I'll carry on best I can. Again thank you everyone you are life savers you'll get what we all go through it's a place I find comforting we all know most people don't understand this disease. At least on here we are understood . Hope the sun is shinning were ever yous all are and hopefully having goodish day .❣️
pain
Weight gain on Tocilizumab / Actemra
Pain and extreme fatigue
women only?
