Flares growing more frequent: Hello, I’ve been living... - NRAS

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Flares growing more frequent

hope-always316
hope-always316
15 Replies

Hello,

I’ve been living with a somewhat undiagnosed inflammatory condition for three years. No R factor in my blood, all blood work is normal other than evidence of inflammation and the pain flits around my body - sometimes hourly causing me to quite suddenly lose power in a wrist, or a knee or a hip and then a few days later it’s back to normal and the pain starts somewhere else.

I’ve been under consultant care for 3 years now and on MTX for most of that time, dabbled with Sulphasalazine but it made me depressed to just back to MTX which was increased from 15mg to 20mg in January. I’ve had Bi-annual system steroid shots which have helped a bit.

My problem is the consultant has washed her hands of me. After my January appointment she sent a review appointment for October! She has said this disease is about learning to live with it and I’m now having flare ups monthly.

I feel I’m getting worse. The MTX increase hasn’t helped, if anything the flares are worse. I’m taking Naproxen every 6 hours when flaring and still can’t sleep for pain (so pain is an 8 or 9 on the scale not the usual jiggles and stiffness).

Can I fire my rheumatologist?? The trouble is there arent many around but I just feel my care is so light tough that she’s washing her hands of me and leaving me to rot.

In January I asked for nutrition advice and she muttered about there’s no cure but Mediterranean diets seem to help some people and that it’s not her area.

I feel neglected, forgotten and in excruciating pain more days than not and I don’t know what to do to help myself.

I am 43, have young children and work in a demanding job fulltime and I’m starting to really fear for the future.

Sorry to vent, I am clearly having a bad day/week/month..!

15 Replies
oldestnewest
Mmrr

You say you have normal bloods other than evidence of inflammation. Can you be more specific ? Are you showing positive for RA ? If you have signs of inflammation, then it need to treated. Simple.

Your consultant is completely out of order and has no right/authority to tell someone they need to live with clinical needs unmet. So no need to tolerate the behaviour.

You can request a new referral, best speak to your GP about the best route to take, don't allow the GP to brush you off. Consider writing to PALS to raise either a concern or a complaint about the consultant. It doesn't take long, a short letter stating your health, blood results, paraphrase what the consultant said and add that you are unsatisfied with your care.

If you accept poor care, that's what you often get. I wish you well.

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hope-always316
hope-always316
in reply to Mmrr

Thank you for the encouragement and I will definitely speak to my GP this week and press for a second consult or at least a more urgent appointment.

I can’t go on like this.

My bloods are all normal - no thyroid issue or R-factor or any of the other tests coming back positive. I’m completely ’normal’ except my ESR level shows varying fluctuations in inflammatory markers in my body.

All I have is raised ESR levels sometimes and debilitating pains that circulates round various joints day to day. Every so often a major joint gets very stubborn and I’ve had either a steroid injection and once had my knee literally drained of synoptic fluid then it was absolutely fine again.

I have no real diagnosis even though they’re treating it as RA.

This all started with a bout of food poisoning 3 years ago. Who would imagine a piece of chicken could wreck my body and my life like this..

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Mmrr
Mmrr
in reply to hope-always316

It sounds as if your care is 'suboptimal ' as my consultant put it after I succeeded with my challenge to her.

Along story, I wasn't believed I was as ill as I was claiming to be , all bloods normal. Repeatedly offered antidepressants....

I got all my notes through freedom of information , and raised a challenge.

Reluctantly she did all investigations again and I had active synovitis in all hand and wrist joints and ankles and enthesitis and tendosynovitis. I'm now on biologics, with letters from her one acknowledging 'suboptimal' medication and one apologising for the length of time I waited for repeat investigations.

I provide written updates on my condition at EVERY appointment now, GP and rheumatologist and request it is scanned into my notes. I get copies of all my results as soon as they are available, scans, bloods etc and I ask what they are writing in my notes st each appointment. I have been very explicit about obtaining infirmation via FOI. I monitor everything they say and do.

The quality of my care has improved. I encourage everyone on this site not to accept poor care.

Be strong, be confident....you are paying for this care through taxes and deserve better. You probably wouldn't accept poor plumbing work or any thing else so why accept poor health care ?

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Sjhoney
Sjhoney
in reply to Mmrr

You give such good advice. I think we so often just accept what we’re told by the medical profession as we believe they know so much more than we do. I’ve never really connected with my rheumatologist as she made a misdiagnosis at the very start and can be patronising. It’s good to call them out now and then 😊

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Mmrr
Mmrr
in reply to Sjhoney

The medical profession mainly do a good job and are under great strain and pressure. But, so are teachers, social workers, police and administrators and we could all add to the list exponentionally. I wouldn't accept poor care from them, so why my Dr? They are not providing me with charity, I pay for all my public services and would be happy to pay more.

Some Drs, I believe, also still try to pull the veil of medical mystique over the normal punter, some still see themselves as special in some way, whilst publicly claiming to be just ordinary people. You cannot have it both ways. The way some Drs speak to patients is shameful.

I'm from a medical family, we all have the Edinburgh medical colours of yellow, brown and maroon (pus, s@#t and blood), never forget we are all made up the same way and should respect the people who come for advice and care.

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StormySeas

Hello there

I sympathise as I suffered similar symptoms with sudden and severe pain in seemingly random joints, although my care was very different as I was diagnosed with palindromic RA.

I think you need to persevere with a review and a diagnosis. There are lot of great replies here with suggestions of how to go about it, I'd just like to give you some support to go ahead and do it as I know how awful it is to feel the way you do.

I was ill for quite a few years before getting treatment that worked. Please persevere and go back to the GP armed with a list of symptoms, dates, severity, and photos if appropriate, but don't give up. Good luck!

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hope-always316

This is what I have!! I’d never heard that term before but looked up Palindromic RA and this is precisely what I’ve been trying to describe to my doctors etc. Thank you!!

May I ask what treatments you have found effective and any other management tips you may have? I feel like the ‘blanket immune system dampening’ approach of my consultant is doing more harm than good. I don’t know whether to try and e more targeted ie. hit flares with steroid/NSAIDs when they happen rather than fill my whole system with MTX which doesn’t seem to stop the flares anyway...

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StormySeas

Hello

Just to say there are many inflammatory conditions with symptoms that mimic each other, so I wouldn't self diagnose.

It seems to me that palindromic RA is treated much the same way as RA, although there is individual variation, just as there is with RA.

I think the main thing is for you to re-present with a list of symptoms. The problem with palindromic RA, or at least in my case, was that I could never get to the doctor, or the rheumatologist when I was at my very worst. So although I could be screaming in pain for 12 or 24 hours, with a small, very specific swelling or redness, by the time I got to see anyone I was reporting that I had been in 'bad pain', which is easily dismissed.

The second thing was that my very severe feeling of 'being unwell', so bad that all I could do was lie on the sofa, was not really recognised as being a symptom. Even now, I don't think the rheumatologist has any conception of simply how unwell you can feel. Like you, I've been tested for everything under the sun, and have only just given up thinking there's something else wrong with me. It's just RA, or RD, as I prefer to call it. It makes you feel shit.

The good thing is that most of this is in the past, but this has taken me a long time, probably due in part to my failure to accept that I have a chronic disease. Of course you might not have RA, or any chronic disease, but it's best to try to get on top of it before it gets worse.

Over 12 years my treatment has been MXT, HCQ, LEF, SSZ, oral steroids when required, so I could work, and now a small dose of MTX, Naproxen and infusions of RTX.

(Link to drug abbreviations here: healthunlocked.com/nras/pos... )

Last year I had a massively swollen and painful knee for 3 months. I couldn't walk up or down stairs. I assumed this was a torn cartilage, and none of the GPs I saw linked it to RA. Neither did I, I'd had nothing like that before. Eventually in desperation I wasted £200 on a private orthopaedic consultation. The 1st thing he said was that it was RA, and after aspiration and a steroid shot, I could walk again.

I've learned that it's important to not to self diagnose, and would also say it's important to seek treatment from a specialist as quickly as you can. GPs simply don't have the expertise, but it is their duty to refer, especially with something like RA, where damage does occur. (It's only from this site that I realise that the swollen hand joints I have are actually permanent damage caused before I even sought treatment - nobody else has told me that.)

So I've waffled on a bit, sorry. The 'blanket immune-system dampening' that you describe is, unfortunately the conventional way to treat RA (remember, you might not have RA). I have CD so can't eat gluten anyway, but tried all sorts of elimination diets with no effect. I think it's important to eat fresh, heathy food, a varied diet, with as much veg and fruit as possible, and to avoid stress. The latter definitely has a detrimental affect on my RA.

If you have any physical symptoms of your flares - ie any swelling or redness, take photos to show the medics. As a last resort I turned up at the rheumatology dept of my hospital once when I was in full flare and pretty ill. This was the best thing I ever did in the sense that they took notice at that point and changed my treatment.

I also try to be very prepared when I have an appointment. I don't say 'OK,' when they ask me how I am. I tell them how RA is affecting my life. I use marks out of 10 or 100 to show how ill I feel (medics like this sort of language). I'm very specific about what I can and can't do and how much worse I am. It might sound bleak but appointments are rare events, short and stressful, and if you're sitting there feeling OK but knowing that 2 days ago you cried all morning because you were in such pain you wanted to die, you have to find a way of communicating that.

Looking back, I don't know how I managed to get through days at work when I was in such severe pain. The point is, you really shouldn't be so I wish you luck with getting a proper diagnosis. Best wishes

PS In my experience Naproxen does nothing to help with pain. They are horrible, blunt drugs, but when my pain was at its worst I eventually discovered Tramadol, Oramorph and Paracetamol. If you are having agonising, unbearable pain, there are things which will help X

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hope-always316

Thank you so much for sharing this. It means a lot to me to know that my journey is not unique and I think the biggest thing I’m learning is that stress is a huge trigger for this, whatever it is. I’ve begun intermittent fasting (fasting from 6pm - 12 noon the next day) which seems to have a strong record in helping the immune system to rebuild. I have been going in circles with diet - between Weight Watchers and getting obsessed with pointing foods (!), considering keto, trying to vegetarianise my diet as much as possible.. but I just get more confused and upset which in itself isn’t helping the stress!

It seems there’s no right answer, only trial and error. I do think, randomly, that tomatoes cause me to flare. It’s not been a scientific process, just observation which I’m continuing to monitor. But I could spend my life second guessing this disease :(

I now have an appointment with the flare nurses (great job title!) next week and the GP the week following so I shall see what they can recommend besides just increasing Methotrexate!

Thanks again 🙏🏻

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StormySeas

Best of luck. BTW elimination diets are difficult and complex, best done with the help of a dietician (not a nutritionalist). It’s very hard to do everything at once. Maybe give yourself a break and just try to eat healthily ie fresh, not processed food, and see you you get on. Keep us posted! X

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Hessie5
Hessie5
in reply to StormySeas

I can relate to everything in your post, many thanks for posting.

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BonnieT

I hope today is a better day for you. I’m much older than you but have dealt with this awful pain for so many years and never had a diagnosis until last year. I used to call my pain “traveling” because it just did. It still does. I’m on MTX now and am a little better but still get flares. I do believe diet helps and gluten free helps me but I don’t stick to it. I’m presuming you’re in the UK I’m in the US. easier here to switch doctors. Some are good and some lack that good bedside manner. I found a pleasant one who listens but says the same thing yours does. I find the quietness of prayer helpful and I call it meditation. Focus on healing from the inside out. Try not to overdo on the good days because that seems to bring on flares. Hugs to you!

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daisychains58

Such wise words... everything you said resonates with me too.

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Iluvgardening

So sorry. You are going through this, I would certainly find a new rheumatologist who has compassion for her patients. Maybe it is psoriatic arthritis, my RA factor is negative and it took along time for me to get an diagnosis of psoriatic arthritis, at the time there was many doctors who knew about or not the ones I was seeing. And with it the pain moves around your body as you stated. One day I may not be able to walk on one of my feet, the next couple of days it would be my hand or wrist or knee! It is a crazy disease. Or it makes you feel you are going crazy! When I was finally diagnosed and I read the information on the condition I had almost every symptom. I hope you will find a great rheumatologist and find out what is going on in your body. Praying and hoping with you.

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turtlemom2

I am so so sorry hope-always! I know how you feel though. I also have a demanding job and inflammatory arthritis. No RH factor. Yes, you can fire her. I think about firing mine all the time. I am currently on MTX but I have heard you have to combine MTX with a biologic sometimes to help when MTX does not do it alone. First I was told Presdisone would help make sure it was inflammatory if it worked it was if not then it was fibromalygia. It did. so then she put me on MTX and said if that works is it inflammatory but if not then its fibro. It seems she can't make up her mind and she stated before since RH is only 14 then she would have to see a deformatity to diagnose me. Yep... I also feel sad, depressed, in pain and worry greatly about the future.

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