Morning all.Apologies this is going to be a bit of a moan.
Current situation is no official diagnosis of what I've got. Previously diagnosed sero negative arthritis, then stills now not sure.
Meds toziludimab infusion monthly, Mtx injection 25 mg, pred which I've gotten down to 12mg, eterocoxib 90mg, paracetamol 8 daily.
I'm miserable my hands are swollen and using a knife to eat is difficult. Getting u out of a chair or bed isn't good. Getting up and dressed in morning takes good half hour. I can swim but walking is slow and I feel exhausted if I try to go shopping. My back/ shoulders hurts but It's not. Normal back pain it's hard to describe. Everything is stiff. My rheumy is doing lots of tests but really wants me to get the steroids down. I don't go near my GP because they don't know how to help. I cry so much when I'm alone because I have to pretend I'm coping and I'm really not.
I have no interest in doing anything because everything hurts and I just can't enjoy things the way I used to.
I have an appointment with the mental health nurse but I don't want more medication I just want to be not in pain for some of the day.
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wilbertjellyfish
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I'm so sorry. I remember well the very symptoms and feelings you describe. Being in pain long term is a real soul and joy sapper. I'm at a loss to know what to suggest, other than has anyone had a good look at tge meds you are on? It's a lot if they're not actually doing the job. I know how hard it is to get hold of medics, but maybe give tge rheumatologist a nudge?
Sorry to hear of your struggles, not surprising you feel thoroughly miserable. Your symptoms sound so similar to mine. Have you ever had a mri of your spine, specifically looking for inflammation, it needs to be a rheumatologist to order and it’s done using a special setting called a “stir sequence”. I have ankylosing spondylitis, and like you it affects every joint in my body. It’s worth exploring. It does normally respond to the cocktail your on though, although stretches are essential as well to break up inflammation and calcifications. I’d gone 25yrs before diagnosis, so mine was initially diagnosed by X-ray of the sacroiliac joints, then the mri looking for further damage.
I use a butec patch for pain, which is a godsend, as you don’t get the same peaks and troughs, as it’s continually giving you a small dose. So my sleep improved immensely once I was on that. Sorry I can’t offer more. Re stretches the cat / cow yoga stretch is excellent for the back, although I appreciate stretching is the last thing you want to do. Do contact your team, to get a review of meds, although it’s generally your gp for patches. Swimming is very good for AS, unless your swimming with head out of the water, as then it can aggravate AS. Hope you get answers and help soon 🤗
Thank you. I did have an MRI a few years ago but I think I need to speak to them about the pain relief. At least I know it's not just me and I'm not losing the plot.
I've nothing useful to say here wjf but my heart goes out to you, I had similar symptoms initially and it was hell! I hope you get an accurate diagnosis very soon and the appropriate treatment, enabling you to get back to some semblance of normality. Big hug from me. xx
So sorry to hear you’re in such a state. Sounds as if you need urgent help from your rheumatologist as the amount of medication you’re on clearly isn’t helping and your mental health is suffering due to the uncertainty of your diagnosis.
Pain and tension is a horrible combination as we all know and now and again the two combine to knock you down too far to get back up by yourself. Probably worth talking to the MH nurse - you don’t need to accept any more pills if you don’t want to, it’s not compulsory, but he or she may have a different perspective on how to cope with your present situation. Keep talking to your rheumatologist (whether they like it or not) which’ll give you an element of control.
Sometimes we need proper help and it sounds that for you, this is now. It will get better. It’s hard when you’re so painful and you can't feel ‘normal’ to carry on - many of us have been there - and you need support and help from family and friends and to ease up on your day to day responsibilities for a while if possible until you feel better.
Wishing you all the very best and hope that the coming week will bring some help and relief.
Really sorry to hear how bad your symptoms have become, no wonder you're feeling disheartened. Please don't feel any need to apologise for moaning, we all need an outlet when things are like this.
There's not much I can add to the lovely replies above, but did want to mention, given that you're experiencing stiffness and pain in your back as well as peripheral joints - that there is a test that can be a strong indicator (though not diagnostic) of ankylosing spondylitis - HLA-B27. It's a straightforward blood test, so hopefully it's been included in the tests your rheumatologist is running. Not saying that's what it is of course, but as a way of ruling in or ruling out potential diagnoses perhaps it could help to clarify the diagnostic picture for you.
When I had to stop one of my meds earlier this year to start a biologic, I developed stiffness and discomfort in my back too, much as I had at diagnosis, and found that stretches really helped. I don't know if this is something you'd consider worth trying or if this is even possible at the moment, but I found a routine on YouTube that brought me significant relief. Pain causes a lot of physical tension, so even if the inflammatory component isn't affected perhaps it might still help, I don't know. The video's here anyway, just in case of interest: youtube.com/watch?v=aauRdFP...
I hope the mental health input is helpful, but it really sounds like rheumatology input is key for addressing the inflammatory symptoms you're experiencing and also providing suitable pain relief. Sending all good wishes, I've been in a similar place and really feel for you.
Again I cannot add much to supportive and great advise from those above. Its hard to go through the trial and error of medication to find a combination that may help.On the MH side,I have had therapy twice when I felt completely over whelmed by pain from multiple conditions and it really helped me. I hope speaking with the nurse helps you to.
Carry on using this safe place to vent because I think thats essential. Sending you warm wishes.
It's entirely reasonable that you are depressed if you are in pain all the time - as we all know on here! A mental health nurse might listen to your worries about coping with life generally while you are in such pain. Unfortunately some of them do just reach for the prescription route which isn't what you want or need at this stage.
If you can, keep politely pestering the rheumatologist for investigations, and then treatment, which is relevant to whatever it is that you have.
Don't push yourself too much, be kind to your body which is suffering, but I do agree that you need to keep moving with the exercise in water especially.
You're welcome to have a moan on here where people really do understand your problems with getting a diagnosis and suitable treatment.
I hear you, I have had 12-13 weeks of high pain as off Ra medication just got back on a new one and waiting for it to kick in. Nothing touches the pain steroids or depo shot or higher cocodomol. In the end your brain just feels fried from it all. I used the Wren the past few months to help keep me sane.
I push thro the pain to try and do things BUT payback is hard BUT I can’t just sit in a chair and watch life whizz past either. It’s all a balancing game and it’s exhausting 🥰
I also echo Deeb’s WREN suggestion (a charity for people who suffer from chronic pain) in order for you to chat with someone without an agenda…just to offload the stress……and then follow up with a call to the wonderful NRAS Helpline who should be able to point you in the right direction regarding getting better help from your rheumatologist. I know that paying for private consultations is expensive but if your NHS rheumatology consultant sees patients privately then you might really benefit from a one-off consultation. You would have more time to explain what’s happening to you (don’t forget notes and someone to accompany you) and hopefully he or she would action matters more speedily. I’m afraid that sadly many of us are being forced into this situation. Take care, you’re not alone and there will be help out there. X
Sorry to read that you are struggling, many of us can empathise with you. I had a tough time recently still going through to some extent and totally understand what your saying about not wanting more medication , you just want the pain to go away.
If your medication is doing its job though you wouldn’t be experiencing this amount of pain and maybe a tweak is needed rather than upping your steroids?
Being in pain when you lead a busy life is not great at all as well as not being able to do things or do them as well as we could is so frustrating to say the least and can/does affect your mental health, I sometimes wish I could wave a magic wand and I’m dressed, hair done etc…still working on that one!
That sounds so awful, it’s a hard read and I’m sending you a hug. I don’t know what to suggest as it seems you’re at the end of difficult set of symptoms. I think if I were you I’d look for a second opinion probably privately and in the meantime photograph the swollen hands, keep a diary of symptoms and try to stay positive. Although of course that’s really difficult when in such pain. I didn’t know this until I broke my leg and ankle that paracetamol needs to be taken regularly not as and when so it might help to try to top up more serious relief medications. I hope you do not get too down and that some solution is found to relieve your symptoms very soon. Xx
OMGosh I can so identify with you and that feeling of despair. If it’s any help you are not alone we all can empathise with you and it’s only natural to feel depressed at times. You are going through so much , just take the time you need to find your inner strength again (it is still there and it will come), explore every option open to you even though that may involve more medication in the short term. Be open to your medical team (don’t hide your fears or your feeling as they are important), rest as much as you need and are able.
I'm seronegative as well ,took ages to be diagnosed.Been through many biologics same worked for ABIT some didn't , next week start my first infusion.Im surprised they left you on all those drugs with an infusion? ive been told to stop my methotrexate and all this week .If I were you I'd ask what your blood work is saying ( rf factor level , CRP level etc)
Good luck with your infusion. The truth is they don't know what is wrong, I just don't get better with anything apart from steroids and they don't want me taking as much of them. My bloods are good at the minute because of the infusion but my joints aren't. They are taking more blood today for more tests.
Big hugs to you 🤗 I'm so sorry you're in so much pain all the time.... I can see it's been suggested by others, but could it be your meds?I hope you get something sorted out soon xxx
Hey. We all know how you’re feeling. I was diagnosed with RA/Ankylosing Spondylitis 32 yrs ago. (When i was 21). So this was about 1993!!!! In those days i was on loads of steroids, pain killers, anti inflammatories. Apart from the atrocious pain. I was exhausted. ALL THE BLOODY TIME! Plus i became moon faced from the steroids. I was thoroughly depressed. I felt so old. But i was lucky. My mum was a nurse. The best mum on the planet. She’d work her asss off at work. Then come home & nurse me!
Technology’s moved on now & i’m so grateful. I have a 6 weekly infusion of Infliximab. No steroids. Only painkillers when i need it. I hope your awful pain can be ‘eased’. You feel like a new person when you have pain relief that actually works! It’s fantastic. Pain is totally exhausting. You can think of nothing else. As others have said. Get your Rheumy to really listen. They have to get this sorted!! I hope you have a heatpad. I’ve had one for over 20yrs. I put it on in bed. I snuggle down. Take some p killers. Then try & take my mind off it. Put a comedy on my tablet. Or a good thriller. (But nothing too scary. It hurts when you jump!! Good luck. X
Don’t worry. We all know that feeling! Just give yourself a ‘hug’. Be gentle on yourself. When i was in agony (& if i could get in the bath) soaking my joints really helped. It was amazing. Have you thought of asking your gp for hydrotherapy? I think it’s harder now, with all the sodding cut backs. But if your local hospital offers this service. It can help. Also. What about massages. I used to get them through my local hospital. (Although the guy i had was quite rough). I even cried at 1 point! (I’m not hoping that for you!) Pain can really bring us down emotionally. With it being November. You feel Christmas is creeping up on you. You feel you need more energy for this time of yr. But don’t rush yourself. You have to give yourself extra time. Say STUFF THE TURKEY. Get someone else to STUFF IT!!! Put gour feet up & have an extra Chrissy chocolate!! X
So sorry to read about how things are for you at the moment wjf. For what it is worth, I have noticed that lower back pain / difficulty standing or walking for long always seem to be a part of my flares, so to me your symptoms would potentially suggest that your current biologic isn’t working effectively. As we know blood results do not always line up with symptoms, especially if you are zero negative. The other point I would make which has helped me to think about in the past, is that when inflammation is high in your body, obviously the pain that creates has an effect on our mental health, but actually the inflammation itself in your brain is also a potential direct cause of depressive symptoms. In other words, who wouldn’t feel depressed, with all that going on?!
It sounds like your Rheumy team are on the case, which is good, but in the meantime, I know how much you are juggling with kids and your own business as well, so my advice for what it is worth would be to look for any areas you can make things a bit easier for yourself at the moment. Yes, we would all like to cook homemade meals from scratch for our family every night for instance, but for a period of time good old ready meals may just have to do? I think that you need to create as much space for yourself to take things easier whilst you ride out this rough period, and come out the other side, and hopefully that would help your mental health also.
Anyway, sending a big hug. Keep us posted won’t you? 🤗
I appreciate what you are saying, the doctors are understandably reluctant to do to much until they have definite diagnosis. Lots of tests up and downs while all the time you are in pain. Swollen hands painful joins The good news is there are alot of things you can do for yourself (please note do your own research and talk to a Doctor)
Obviously and most importantly start taking a proper vitamin D 3 and k2. Your body can not function without these. For me I've found three times the current "recommended ", dose works best, it's still well under the new revised amount.
Drink plenty of clean water untainted. Always a difficult one if you can something like a tested spring water. Water containing fluoride is noted to cause a range of health issues
Look at your diet . If you are still using vegetable oil "STOP ", it's terrible stuff one of the side effects is swollen joints. If you don't want to cook with butter or lard coconut oil is a wonderful alternative. A proper Olive oil if not heated is very good for you. Apparently there are lots of fake olive oils so buy a known brand from a reputable company.
Don't drink anything like coke and avoid sugary drinks and even worse manufactured sweeteners.
If you have a sweet tooth stivia is a natural alternative.
I could go on but hopefully you get the idea. I've found researching not only Beneficial health wise but mentally as well it helps takes my mind away from the pain.
I've been using creatine monohydrate since I read a nhs heath news letter, it's given me back movement in my hand and the nodules of that where on my fingers have gone.
Just a reminder do your own research, if in dought talk to your doctor.
we’re all different, I recognise what you’re saying. I don’t suffer anything like your pain levels these days but used to. When it was sporadic it was easier to tolerate by telling myself tomorrow would be better . When it’s endless it’s much harder but I found talking therapy helped me.
As an aside, in 1979 when my diagnosis was given it was Indocid SR capsules that helped me get moving and distalgesics helped with the pain relief. Not much use as this is such old information I’m sorry.
I can offer you a warm and gentle virtual hug and a listening ear at any time. Remember we are all here for you.
We are all different, and I can't claim to know exactly how you feel, but my experience is definitely similar. It took a long time for my diagnosis of Sjorgen's Disease and pulmonary fibrosis to be confirmed. Eventually, I paid to see a rheumatologist. He said I had several connective tissue diseases, and he also detected 'crackling' on my lungs. At this point I had no symptoms of lung disease. The consultation I had with him got the ball rolling very quickly, and my subsequent NHS treatment has been very good. When I was first diagnosed I was at my lowest. It wasn't just the diagnosis but also the effect I felt it had on my life. I felt like I was grieving for my old lifestyle that I was no longer able to live. I was so depressed. My GP recognised this and gave me Duloxetine. I was happy to take anything at this point. I'm still taking Duloxetine and feel so much better at coping with the day to day stresses and challenges of having several chronic illnesses.
I really feel for you, as 18 months ago I felt very much like you do now. I hope you can talk openly to your GP about how you feel mentally as well as physically. Duloxetine are also prescribed for pain relief. Maybe not for everyone, but they've been right for me.
So sorry that you are having such a bad time. Pain is so awful, everything is affected, inflammation is a hard taskmaster.
Please be kind to yourself, don'don't feel that you "should" be able to cope. We all know that at times we can'can't.
You have an appointment with a mental health nurse. Make the most of it, tell them how hard life is. I have had great help from seeing counsellors......someone to listen can really help. And medication can give some relief. They can access different ways to help.
I hope you can get through this, you will find a way. I hope you get the appropriate help. Take care....and be good to yourself xx
Sorry to hear this. 🩷 You said you were able to swim. How about gentle exercises in a hydro pool. I used to go and do my own routine every week and pay £10 for an hour for a session in a school private pool with 6-10 other people and loads of space. Water temp lovely and warm to exercise in. Also I think the WREN Project Deeb has detailed before sounds excellent for ways of coping with auto-immune conditions. I hope that your Tociliz starts to soon have more effect for you. 🤞🏻
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Inside of knee?
Losing my mind whats wrong with me!!!
Fatigue comes in waves ...
Back to methotrexate...which I'm allergic to?!?!
