I'm new here and feeling so lost and confused... - NRAS

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I'm new here and feeling so lost and confused...

BeMindful profile image

Hi everyone, I've just been to my first consultant appointment for my RA, and I feel confused, lost, and fear I'm going to be left to deal with my stiffness, pain, inability to do normal stuff including fun things like crafting.

The doc was nice and doesn't want to put me on immune suppressing drugs too soon, but he never heard my full story (or even 10% of it) because he asked such quick fired questions where I might manage 1 word responses or some none at all. It was all so overwhelming and because I have a bubbly personality (who masks pain and suffering), I don't think he believes me. My family history is strong, but also strong in not having RA or inflammation markers...and despite my swollen joints on my hands, I apparently am "normal" according to my last blood test...

The why am I struggling to write even this short post????

I'm worried about the rapid change in my joints which I'm seeing every few weeks. I use my hands to do things that bring joy to my miserable life. I make beautiful crafts. If I lose that I don't know how I'll make it through each day. I already can't do it weeks on end, and I feel so depressed.

Has anyone had a similar experience? What kind of joint damage is a sign they are turning seriously? (most of my family for generations were severely deformed) Are there alternatives that I can be doing? (exercise, supplements, diet, stretches, etc.)

Also, I am a part-time gardener. Should I stop? I don't want to destroy my hands more, but I barely can work at the moment between the RA and my mental health. I can't find any benefits to help because searching is so difficult, and I just can't work full-time or in an office with my anxiety.

Any help/advice would be greatly appreciated.

Thank you so much in advance! xx

74 Replies

So sorry that you have to join us, but you will find much support. Unfortunately if you are seronegative it can be a bit of a struggle to get accepted as being quite unwell.

It might be worthwhile contacting your rheumatology dept stating that you are unwell and require some advice.

I've found that being firm, but polite gets the best results. Best wishes.

BeMindful profile image
BeMindful in reply to Mmrr

Thank you so much for your reply. I will keep at them! Best wishes to you too x

madme1 profile image
madme1 in reply to Mmrr

Hi Mmrr, what does seronegative mean please it's a term I've never heard before. There many times when I've felt I'm having a flare up yet my bloods are normal is it something to do with that? So many new terms I'm finding it hard to keep up with them all!

Mmrr profile image
Mmrr in reply to madme1

Around 30 % of people with RA are seronegative meaning their blood does not show rheumatoid factor or Cylic citrullinated peptides antibodies. However some people without RA can show RF and/or CCP in their blood, so the tests are not definitive.

Here is a link to the NRAS page which explains the difference between sero positive and sero negative RA.

nras.org.uk/resource/seropo...

madme1 profile image
madme1 in reply to Mmrr

Thank you, I understand it now..... I think! 😊

AussieHiccups profile image
AussieHiccups in reply to madme1

Yes - my understanding is that in the serums they test for the markers for arthritis, they dont show up, so its a 'negative'. But one has all the symptoms of 'arthritisish' type illnesses. Say RA or Polymyalgia etc. I agree its very confusing and hard to fathom, understand and cope with at times! (So therefore hard to treat too?)

madme1 profile image
madme1 in reply to AussieHiccups

Thank you AussieHiccups, yes it is confusing 7 years ago when I started it was my CRP level that was showing as raised. That's well as the fact that I had all the symptoms of an underactive thyroid, but could not have any treatment. This was becauseas one gland at the front my head was compensating for the other, bringing my thyroxine levels to just over the norm.

It really is quite terrifying that rheumatology consultants still exist that are inept enough to believe you can’t have inflammatory arthritis with normal bloods. In which case, ultrasound is what’s required to say with certainty there isn’t (or absolutely is!) inflammation. There’s also no such thing as starting appropriate treatment for inflammatory arthritis ‘too soon’. If you have it, it needs treating as soon as possible to prevent permanent damage, both to joints and in terms of systemic inflammation in organs.

You have possible disease symptoms and it’s a fact that blood results are not definitive. Push for an ultrasound of the swollen joints in your hands: if it’s any kind of inflammatory arthritis, it will show that way. If the deformity is arising from osteoarthritis rather than inflammatory, an ultrasound will differentiate that, too - it’s a win-win. If you have a good and understanding GP, you could ask them to request one for you, regardless of rheumatology, but I would take it up with rheumatology in the first instance and see what reply you get from them.

Mmrr profile image
Mmrr in reply to Charlie_G

It is quite astounding the lack of knowledge in those we rely upon for assistance.

BeMindful profile image
BeMindful in reply to Mmrr

I completely agree! I've been astounded at the same for both diabetes and RA this past year. I know the health departments are in such a strain, but being helpful or kind also seems to have been lost. It's been a struggle to get advice or information! Plus, I am always one to help prevent when possible. As you say, why wait when this is our livelihoods in all meanings of the word?

madme1 profile image
madme1 in reply to Mmrr

It was my rhuematology nurse who told me about Nras and said you'll probably get more up date information and guidance from them.

Mmrr profile image
Mmrr in reply to madme1

That's excellent.

BeMindful profile image
BeMindful in reply to madme1

Thank you! I have it on my list to call. I'm a bit behind having felt unwell from the flare up for several days. I'm hoping tomorrow :)

BeMindful profile image
BeMindful in reply to Charlie_G

There is so much here that I can go and research for a more knowledge and advice on what to do. I can't thank you enough as it's helping me point a bit more in a direction.

Charlie_G profile image
Charlie_G in reply to BeMindful

I’m glad it was helpful. My own story is 20 years of symptoms and ten years of back and forth being constantly told ‘your bloods are fine, so it can’t possibly be arthritis’ 🤷‍♂️ At that point, I was still quite medically green in some areas, so didn’t know any better. I was finally diagnosed with psoriatic arthritis at the start of last year. How? Ultrasound of a single swollen knuckle. Had they at any point scanned any of my effected joints when they were previously swollen, I would have been diagnosed years ago and potentially far better off for it. Instead, I’m 37 and increasingly disabled. Normal bloods (by which I mean completely normal, including crp) are very common in PsA, but also not unheard of in RA by any stretch, so to rule rheumatic disease out on that basis alone is ridiculous. Particularly when ultrasound IS definitive when there’s active inflammation. Diagnosis isn’t always straightforward, but I firmly believe it could be a lot more reliable than it currently seems to be for anyone seronegative. Because the go to for diagnosis is blood work, studies repeatedly show that those with seroneg arthritis of any kind still wait a lot longer to get diagnosed and be offered treatment than those that are seropositive. The outcomes in terms of remission for those with seroneg arthritis are also statistically significantly poorer as a result of delayed diagnosis.

In terms of inflammatory arthritis versus OA, the pattern of pain and stiffness is useful diagnostically. In OA, the issues tend to get worse with joint use, whereas resting the joints tends to make RA and similar worse. If that’s what you’re experiencing, that your hands are worse when you use them, in combination with normal bloods, I can see how a conclusion has been drawn, but then OA needs to be diagnosed, explained to you, and treatment potentially offered, too. I recently went for x-rays on my hips and the report stated I have moderate OA, no significant changes to previous imaging from October 19: I’d been told the x-rays in 2019 were normal. I’ve been complaining about my hips for the last 4 years, and gradually struggling more and more with walking for the last 8 months.

I love the NHS to death, it’s saved mine and my daughter’s lives more than once, but they’ve also got it horrendously wrong with both of us on multiple occasions. Knowledge is power when the only ones that can truly advocate for ourselves is us. Staff get to go home at the end of their shift, but our bodies are just as much our homes as our houses are, and we’re the ones left holding the pieces if things are missed going wrong with them or the care is poor. Not them. I trust medical professionals, I respect that they’re far more qualified than I will ever be, but my trust is not blind. Nor is it absolute and unquestioning. Not when they’re all also only human at the end of the day, with all the flaws and faults that come with that!

BeMindful profile image
BeMindful in reply to Charlie_G

Thank you so much for sharing your story with me. I have enough turning in my fingers, the strong family history and patterns similar to what I do know of their suffering to not think it's OA. The GP (x2) strongly agreed as well, and I'm confident in those in particular I've seen. I know my mom, grandfather and great-uncle went through a very similar timeline in diagnosis due to the focus on blood work as a diagnosis, and it's something I feared I would face when I started to notice I probably had it too. As you say, with so much strong evidence to show the weakness of blood work alone, why not do an ultrasound? It's 'mostly harmless', and can help us get the help we need so the disease doesn't progress.

I am American having lived here 10 years tomorrow (whoo!), and I can't thank the NHS enough. They have done a lot for me and have saved my son's life as well, but we have also had to wait for an asthmatic diagnosis for him as a child and have had failings myself that were quite significant. I still think it's brilliant, and it's well said that they are human and also get to go home. It's knowing where and how to push. A lot of the advice seems to be for those who come up positive, which can be frustrating. I'm a practical person (I wanted to be an astronaut and was going to be until my diagnosis of diabetes.), and I am a firm believer that we should be part of our therapy. So, whatever I can do to help shrink this timeline of them believing me I will try.

I'm so sorry to hear you've had such a struggle and that your body has had to suffer as a consequence. I really hope your timeline can shrink so you can get the help you need as well.

I wanted to be an ice cream lady! You guessed it- I didn’t manage that either🤨

Haha, but it sounds like a dream right now as I find the cold helps my hands! :)

madme1 profile image
madme1 in reply to BeMindful

I think it's cheaper to do a blood test than an ultrasound but, in the long term, surely its the opposite?

madme1 profile image
madme1 in reply to Charlie_G

That's what my RA nurse said to me he actually said I like you.... I like it because you ask questions and explore to help you understand. Sometimes, when you realise what can happen it can be scary yes, and I would not advocate self-diagnosis, but you have to balance that with just because it can happen doesn't mean it will happen to me. Also the more you can understand and realise that other people are with you going through it, it makes a heck of a difference.

BeMindful profile image
BeMindful in reply to madme1

I fully agree. It's finding that balance so that you can have enough knowledge to push through some of the barriers we face as patients sometimes.

Hiya & welcome. Further to the good advice you've already received & in place of your Mum not wishing to share her experience (which is a shame but potentially understandable) maybe a read through the NRAS website would be of help. This may be a good place to start nras.org.uk/resource/diagno...

Keep talking here too, we've lots of experience to share between us. There's also the helpline if you'd like to speak with someone 0800 298 7650 Mon-Fri from 9:30am to 4:30pm.

Thank you, this is helpful! I've perused a bit, but I think I need to look at the website again with the slight increase in knowledge I have now. It is a shame about my mum, and this is a helpful way to get help too. I'm so grateful for all of you!

Hi BeMindful. I know it's frightening when you are first diagnosed. It sounds like even though your hands are swollen your bloods don't reflect that. I started in much the same way and was seronegative. It wasn't long before I was seropositive. Your family history and your stiff and swollen hands should be enough to convince the rheumatolgist. Has the rheumatolgist put you on any meds at all and were you given the chance to say there's a family history?

BeMindful profile image
BeMindful in reply to Biofreak

He barely listened to me, cut me off. I had to try to speak as quickly as possible to fit it in before he asked something else. He didn't take notes, and I'm not sure he fully listened. He is reluctant to put me on any medication. At the moment, I'm only taking naproxen which my GP prescribed when the pain and swelling came back after 6 weeks of steroids. Thank you for your reply!

Biofreak profile image
Biofreak in reply to BeMindful

That's not good enough on his part I have to say. Long term use of Naproxen isn't recommended by most rheumatolgists. I think if I were you I would write a letter to the rheumatolgist and say all the things you really wanted him to be aware of such as the continuous pain and how it's affecting your life and say you cannot carry on like this without proper long term medication to reduce the inflammation. Tell all about your family history of RA and if you feel the stress of it all is affecting your diabetes, say that as well. I know if my RA flares up it raises my glucose levels. You deserve to be listened to and not have to wait and see. Enlist the help of your GP if you can. I empathize with you as I have a family history of RA and I also have diabetes. With the right treatment you will get your life back and do all the things you enjoy but it can be a bumpy road. I wish you all the best.

BeMindful profile image
BeMindful in reply to Biofreak

That's exactly what I thought about the listening, the Naproxen, and my fiance recommended to write a letter as well. I will try to make a phone appointment with my GP as well. She's been brilliant through all of this. I appreciate the extra help of what to put into the letter as well. Thank you so much!

Biofreak profile image
Biofreak in reply to BeMindful

It's really not a problem. Happy to help if I can. The fellow sufferers on the forum understand what you are up against as we've all been where you are. Glad you have some support and don't hesitate to ask questions as you go along.

BeMindful profile image
BeMindful in reply to Biofreak

Thank you! One day I will pay it forward :)

I'm sorry but it is a long journey and perhaps write down how you feel as if you were side tracked then some important points may have got lost. Its not just down to a blood test as some, and I'm luckily not one of them just don't test positive yet do most definitely have RA. I'm puzzled did you not get offered any medications at all and did he/she examine you properly ? I have had RA for a long time but its been well treated without too many issues and my hands are normal and not damaged at all. So don't loose hope or think that joint damage is normal because for most these days with good medications it most definitely is not its a bit inconvenient at times but doesn't really have mush impact on life. For me its just 2 pills a day and a jab once a week. Do ring the NRAS helpline for advice as it des seem that you haven't had a good experiance and should really get some more help. Although of course and I'm not making excuses but the strange times we are living in are impacted so badly on the normal services that the clinics may be rushed or have doctors who are not fully informed on RA or even may have not read a patients notes which is inexcusable but happens.

Thank you for your reply. He said he's waiting A MONTH to put me on possibly methotrexate. I just really don't think he believes me. He says he doesn't want me to be put on something like this to risk damaging my body by putting me on them too early. I have the same thought process that if I keep seeing several changes in my joints since May every few weeks, isn't that evidence enough to put me on something to help prevent anymore damage?

It is very helpful to hear how the medication has helped you so much. It helps me see the hope of what might be as right now it's so limited.

I will ring the NRAS helpline as well.

Thank you again!

Maybe and hopefully to give you some courage to say rheumatoid didn’t stop me doing my art. I did a BA Fine Art and an MA Printmaking which were the most physical activities I’ve ever done. I had some spells over those years where I had to take it a bit steady and pace it, but despite RA and OA in my hands and arms I definitely I can still do everything I used to do art wise. If your fingers are stiff it is hard but they do tend to calm once RA under control and they aren’t swollen. I found wax hand baths excellent for relief. I do home gardening but can’t bend to the soil so let my husband plant things. All else I can do and I pace it. No spade digging as that’s too arduous but trimming and pruning etc is fine. There are some excellent gardening tools for easy grip etc and lightweight too.

If you have RA diagnosed, did the rheumy say of any RA meds he might start you on to control it as that’s the key .. controlling it.

I always found/find hydrotherapy sessions helped all joints including hands. Good luck. 💗

I nearly cried reading your reply! It's my biggest worry of all as I'm hoping to make a small income with my crafts, and if not, it's so important for my mental well being. I will try to find those tools and try the hydrotherapy and wax baths as well. It's all so helpful, thank you!

Sorry you’ve joined us, but it’s not an end to your crafting and gardening. I was also zero-negative (so blood test normal), but I do have RA. The early untreated stages are often the worst. Once you find the right drug(s) that work for you, you should be able to get back to most of what you do, accepting that that sometimes you may need to be careful no to overdo it.

I already had one or two joint issues before the RA developed and to my knowledge despite the swelling and pain in lots of joints in the initial months, I don’t think I have any major additional joint damage.

I’m not sure why you’ve not started drug treatment. Perhaps the Rheumatologists suspects you have a reactive inflammatory arthritis and that it may get better on its own. But check, ask or email asking why they’ve delayed the start fo treatment. Because if it is RA, early treatment is likely to give you the best chance of remission. Indeed my first Rheumatologist started me on methotrexate straight away and, in my case I went onto remission in about 6 months and then was off drugs for 8 years. Back on methotrexate now, it came back in 2020, and in drug controlled remission.

BeMindful profile image
BeMindful in reply to KeenGreen

Thank you for your reply and sharing your story as it's helpful to know the before and after of the medication. I can't understand it as well since my GP referred me urgently 3 times as I see changes in my joints (subtle ones) every few weeks and have been since May. I keep hearing early medication is the best. He says he doesn't want to put me on methotrexate too early??

That's wonderful you went into remission for so long, and I hope that you find yourself in remission again soon!

barbieg profile image
barbieg in reply to KeenGreen

I’ve never heard of anyone being in remission for so long. I’ve been told I will be discharged because my blood tests are ok and I’m sero negative. I can still feel the RA in my hands and I still suffer the flu like symptoms so my question to you is were you totally RA free all those years? I’m intrigued.

KeenGreen profile image
KeenGreen in reply to barbieg

Yes, I was RA symptom free for over eight years. I don’t know how rare or otherwise this is. That said, when it came back last year and I was pushing to start treatment, i found a couple of research papers suggesting that early treatment, ideally within 12 weeks of onset of symptoms can lead to drug free remission. But if it does come back after a period of remission, then further long-term drug free remission is unlikely.

When I first got an inflammatory arthritis (my Rheumatologist thought is most likely to be RA, but it could have been a reactive arthritis and I hadn't had any noticeable infection prior to this), it came on suddenly and severely so I got referred quickly and started treatment quickly. Maybe this was a factor - but who knows?

Regarding your position, if you don’t agree with your RA team re. your potential discharge, challenge them. Perhaps ask for a second opinion. In my case, my bloods are normal and I’m seronegative, but i still get one or two niggly symptoms and can feel the RA in my hands and elsewhere when I miss a couple of doses (as I did after my flu vaccination). My RA team are keeping me on 20mg of methotrexate until I’ve been symptom free for at least a year and will only then consider reducing my dose.

Good luck

barbieg profile image
barbieg in reply to KeenGreen

Thank you for your reply. You are very lucky with your Rheumatology team. I had been diagnosed with Fibromyalgia for 30 yrs when the RA kicked in 17 yrs ago. I ended up going private as my GP kept telling me I was suffering a Fibro flare. I suppose I had RA for around 3 months before I was finally diagnosed as Sero positive RA. Sulfasalazine was my first medication and worked until 2018 but by then my consultant had told me I was Sero negative. I had to fight to have Methotrexate prescribed which worked well until this year when I had to stop it because of gut issues. I’ve not taken any medication for 6 months and I’m managing ok, other than my hands and back and I also get flu like symptoms. I always have had that. I have known my consultant wanted to discharge me for a couple of years (just a feeling!) but have now had a letter to say so. I have written to her twice but had no reply. My worry is when RA rears it’s ugly head again, I will have to start all over again, waiting months for an appointment and on my own this time as I lost my husband 5 yrs ago. My consultant has made the decision with no discussion with me. I feel totally discarded and on the scrap heap, not a nice feeling.

BeMindful profile image
BeMindful in reply to KeenGreen

Interesting the research you found. I have found similar research cases through my digging over the past several months. How did you find the side effects of methotrexate?

BeMindful profile image
BeMindful in reply to KeenGreen

barbeig: I'm really sorry that you also are having trouble with communication with your RA team. It's so isolating when you feel unheard. I appreciate your worry of a flare up because I share the same not being on the medication. I'm also sorry to hear about your husband, and I hope that you can find success in properly speaking with your consultant to sort things out.

I should add that when my RA came back the first Rheumatologist my GP referred me to did not put me on methotrexate suggesting she thought my arthritis was probably reactive and would disappear eventually. I wasn’t happy with this and got a private online appointment (£200) with another Rheumatologist who diagnosed RA. Once i had the private diagnosis my GP supported my decision and re-referred me as an urgent patient to a different rheumatologist. So I changed NHS rheumatologist and was put on Methotrexate by the new one. So you might try this. I went with Top Doctors for the private appointment. I am in remission, barely any symptoms (just the odd joint now and again but v. low DAS score), but this time drug controlled.

BeMindful profile image
BeMindful in reply to KeenGreen

Thank you. I cannot afford to go privately at the moment because I can barely work between my struggle with anxiety, depression, and now RA. I've searched for benefits, but I've been unsuccessful. However, I will keep all of this in mind, and the rough estimates are incredibly helpful just in case we find the money if things don't improve.

If you have a good relationship with your GP, try to get a face-to-face appointment with him and explain your feelings as you have here.It sounds as if you may have Sero negative arthritis,& that can be difficult to get diagnosed.

Your GP should be able to contact that Rheumatologist & possibly get you another appointment where you will be more prepared.

If you don’t feel you want a f2f with your GP….why not send him a copy of the letter you have written here?

I too don’t go in for the handwringing or crying to get my point across but I have been lucky enough to only have had two Rheumatologist in 20 years and they have both been very supportive…I have very little joint damage & can still lead a good life.

I was fortunate enough to be backed by blood test results as sero positive , & I was put on DMards very early….so don’t think too far ahead of yourself..it’s early days yet.

I hope you find your GP is helpful.

BeMindful profile image
BeMindful in reply to AgedCrone

My GP has been seriously amazing. They had no question it was RA from the family history and the way my fingers are presenting, but I do appreciate they aren't specialised. I have some voice notes I made over the weekend while I couldn't type for a letter to the consultant. I was planning on copying the GP in, and it's a great idea including some of what is in this posting. I hadn't thought of that! I'm really grateful that you've had a different experience. Show's me hope :)

AgedCrone profile image
AgedCrone in reply to BeMindful

There is always hope…it doesn’t hurt to have a good old wallow… but on your darkest days…..try to have something to look forward to….I find planning even something simple takes your mind off RA for awhile… ....right now my RA is behaving….but I have had no c/htg or hot water in my new house since Sunday…now that does concentrate the mind on other than RA 😡😡😡

Welcome to the group. I agree with Mmrr. You need to speak to someone about your worries and concerns. Give your rheumatology clinic a call and tell them what you have told us. I am afraid you may have to push because if you are seronegative it is more problematic to diagnose. I too am a crafter and love my garden. If you google you will find garden tools that are chunkier and will make using them much easier for you. Get a kneeler that has sides and even a seat that can help you get up and down easier. You don't say what type of crafting you like but maybe you are like me and enjoy many different crafts. I am afraid this will be more of a problem to adapt. I used to do a lot of crossstitch which I can't do any more so started scrapbooking and cardmaking. I did patchwork and quilting but found it painful for my back. I looked for other hobbies that were painless. You could google things like crafting tools for arthritic hands or easier handling tools for crafters. You will find lots of help because there are lots of people in the same position as us. I think the key is not doing too much at a time. Little and often keeps your fingers moving but won't damage them. Do you take any painkillers? Maybe that would help if you took something, even paracetamol 30 minutes or so before you start a crafting session. I hope you get to speak to someone soon.

BeMindful profile image
BeMindful in reply to Sheila_G

Thank you for your reply! I enjoy all sorts of crafting: knitting, crocheting, painting, paper crafts using a die cutter, sewing, refurbishing old furniture and 100 year old sewing machines. I love to reuse to things to bring them to life or give them a new purpose. I'd love to make my part of the income doing this if I can save my hands. I think knitting (one of my least favourites) will have to be minimal, but my mom swears by crocheting each night to keep her RA fingers moving. I hadn't thought of looking for special crafting tools. I'll have a look! Thank you for the timing and pain killer advice too :)

Sheila_G profile image
Sheila_G in reply to BeMindful

You are welcome. It sounds like we enjoy similar hobbies. I hope you can adapt to enable you to continue with them.

Can’t add to the excellent advice you’ve had, but wondering if your GP could refer you to another rheumatologist - seems you’re going to struggle to feel confidence in, or have a useful dialogue with, that one. And push for an ultrasound - Mine showed alarming inflammation even when bloods showed none - ‘fortunately’ Im sero positive so that helped.

BeMindful profile image
BeMindful in reply to janmary

Thank you! I'm really hoping she will refer me to a new one when I write to them this week. An ultrasound appointment is coming my way, but no date as of yet. I'm glad that you hopefully were helped sooner because you are positive, but I'm sorry you have to deal with it at all and can find some relief.

What ho helloFirst things first take a deep breath. Ok now, my first appointment was a bust….. My bloods came back normal as do 20% of people with RA. I contacted the CATS team and on one look of my hand they ordered X-rays and ultrasound. Senior radiologist called it as RA with damage to my Luna bone due to time in flare. I got angry and put my big girl knickers on and made an appointment at the private hospital. I know I know we should not have to do that but I was going to take charge. I want lie it cost me £600 to have two consultants and an second ultrasound. Result I got to see a first rate consultant, who transferred me to his NHS list, at a near by hospital. If however you have a good GP talk to them but do try the CATS team too. This site has support and encourage me don’t forget they can help too. ( RA insider joke) Fingers crossed you get it sorted.

BeMindful profile image
BeMindful in reply to Wraf22

Hello to you too :) I keep forgetting to breathe, so thank you! I appreciate you wanting to take charge because we are the ones who need and use our hands. That's how I feel now. I'm sorry you had damage, and I miss crossing my fingers without pain! :)

Wraf22 profile image
Wraf22 in reply to BeMindful

I know how lucky I am with my consultant, it is harder to fight for yourself rather than others. Be nice to yourself, you we all deserve to be seen. ( a side note when we last met he said I had Degenerative disc disease in my neck, scoliosis early onset, rheumatoid arthritis in my right hand and osteo in my left knee.I asked if I get a price for having a full set. He left the room went down to the children’s ward and got me and I’ve been brave sticker)

Hi - sorry to hear you had this experience. If you are unhappy with your consultation there are a few things you can do. One is to get in touch with the hospital's Patient Services and raise a concern about how you are feeling and that you would like another appointment. The other is to raise a complaint. I would go with option 1 to start with. Only you know your own body, but also the clinical team can only make a diagnosis from facts (such as your blood results) and your descriptions, so you do need to be accurate and honest. For your next appointment have everything written down and start the consultation off by stating you have everything written down and keep referring back to it. Good luck 🤞

BeMindful profile image
BeMindful in reply to Amandaazz

Thank you for the advice! I had forgotten about those avenues. I had everything written down, but I wasn't able to even look at them. He just interrupted me within 1 min for 7 min. (I'm not exaggerating, unfortunately.) I will try stating I have my notes written next time, and I am going to be some of it in my letter to them.

I can understand your frustration I don’t have RA but do have AS. I attended my local rheumatologist for 3.5yrs trying to get a diagnosis. I was also diagnosed polymyalgia and given steroids for that but knew something else was going on. I ended up going to Leeds 250 mile away as I’d developed GCA symptoms which my rheumy ignored as I was only 46 and couldn’t be that unfortunate. A medical adviser on the charities forum was horrified by lesions on my tongue and asked me to get a referral to her. I was then diagnosed with GCA. However she agreed that there was something else going on and after X-ray of pelvis and spine, which showed several areas of fusion, I was diagnosed with AS. However I had to be transferred back locally for urgent biologics. What I will say is if your rheumatologist is considering starting methotrexate, he must be considering an inflammatory arthritis.. Unfortunately they go on the evidence and can’t diagnose based on a patients description. There are set criteria that need to be met, in order to attach a diagnosis label to a patient. It often does take time gathering that evidence, and if this is your first visit it’s early days. I’ve attached the criteria needed for a diagnosis of RA, to hopefully help. A good rheumatologist will keep his options open whilst they gather their evidence. Hopefully things will start happening soon. By all means contact and request an ultrasound of your hands, many do their own ultrasounds in clinic, so perhaps they could book your next appointment with someone on the team who does them, rather than wait for an appointment from radiology.

ard.bmj.com/content/annrheu...

Hi there! Thank you so much for your post but also the RA criteria. I'm trying to find a good arthritis tracker to keep track of how my hands are in hopes it helps, and this will help me. I can only seem to find trackers that do full days, but it's changeable in the day. I'm really sorry to hear that you had to wait so long for a proper diagnosis and go through all of that. I'm waiting on my ultrasound appointment, so hopefully that will help too. I really appreciate your advice.

At first I was diagnosed with fibromyalgia and the rheumatologist said we had to be sure it was RA because the medicine was "really bad." My hands were so sore. I could not even pick up a knife to cut an onion. Eventually my hands did improve without medication but a year later I was diagnosed with RA. The thing that bugs me is they say early detection is important but won't risk giving the medication because of the side effects....yet when they are sure you have RA they give you the medication and act like it is no big deal!!!!! I was seronegative as you are and I didn't have any damage that could be seen on an X-ray or ultrasound of my hands after having untreated RA in my hands for almost 2 years so although your hands are very sore they will get feeling a lot better! I would do everything you can to follow in Keengreen's footsteps and aim for the remission. Advocate for yourself as best you can. If you hit a brick wall a month is probably not too long to wait because no one even defines what early detection is. Use your hands as much as you can to keep them strong and exercised. You won't hurt them more by using them.

BeMindful profile image
BeMindful in reply to smilelines

When you said you couldn't pick up the knife my hands ached in sympathy! I was gardening today at work, and I couldn't pick up the leaves without feeling I didn't have the strength and it being too sore this morning. I feel like shouting out loud to the screen saying, 'I know, right?!?!?!' regarding them not wanting you on the drugs then popping them on you quicker than you can take a breath. I'm so happy to hear they might feel better one day as I just want to get on with my life again. It feels so stalled, and it has been for so very long (I've had pain prior to my earlier diagnosis plus mental health suffering from bullying and burnout in the workplace). Do you find any particular exercises or stretches work for you? Thank you for your reply!

smilelines profile image
smilelines in reply to BeMindful

Honestly, I did not do any specific exercises just whatever felt ok. I remember going swimming with my hands closed in fists as the water hurt too much as it ran over my fingers so I did nothing when they hurt that much! I did get one of those squishy baby toys and squeezed on that as I watched tv. And I did the hand exercises they do on Sit and Be Fit. Do you get that show on tv? I was reading some responses and I had an ultrasound that showed increased synovial fluid in 5 joints and was still diagnosed with fibromyalgia rather than RA. So don’t let them do that to you!! An abnormal ultrasound is not a guaranteed diagnosis.

I just checked and there are a few Sit and Be Fit on You Tube that you could try. She has you do finger exercises with a ball etc. I am in Canada.

You will be okay it is just a lot to take in at first. We call ourselves RAwarriors on here! We fight for ourselves and for each other. So be kind to yourself read all the good information on this site and take care 🌸

Thank you for your kindness :) It's been so heartwarming seeing all of these responses and helpful with the advice. All of you are amazing :)

Hi BeMindful, I know it's hard but don't despair, we are a great bunch of people here. If you are not happy with your consultant, my first one was awful, and saw me for all of two minutes, then you have to request a change or second opinion. You have to be a little bit pushy, I thought that was beyond me until I started getting ignored. Then I fought back. They knew I wasn't going to go away quietly! 😊. You have to make some noise. If you have a contact no for your rhuemy team don't be frightened to use it and let them know you don't feel heard. NRAS are also a wealth of knowledge, resource and reassurance, don't be frightened to use them.

BeMindful profile image
BeMindful in reply to madme1

Thank you, I'm trying! I can see how wonderful you all are, and I'm so happy I found you! I was born in New York, so standing up for yourself and fighting back is in my blood. I now have so much advice on HOW to do this. Thank you so much :)

Hello there from across the world in Australia. I dont have RA but my grandmother did and I am having some troubles with pain in my joints etc so I am on Presdnisoline for Sero Negative Arthritis. There are many different types of Arthritis it seems, so I believe a Specialist is the only option, and that they should be able to give one a diagnosis before prescribing some medications. (involves lots of tests etc) However, most Specialists are very good and many people on this forum seem to have great quality of life MOST of the time while under a Specialist, and in the UK it sounds as though you get pretty good follow up from 'Rheumy' Nurses or Case Workers, which I haven't heard of in Australia. My Specialist wants me to go on Methoxetrate - which sounds like a wonderful fix for many people with RA. Lots of ppl on this forum have made me very aware of NOT feeling anxiety in taking it. (I have to admit I have not started it yet as I want to discuss it further with my GP and Specialist. But I am lucky I am not in extreme discomfort) Dont be scared you wont have some quality of life again. You will, but you will need patience while you get the medical intervention you need. For some people it seems to take some time to 'tweek' the medications they need for them. Remember everyone is different and it might take some time to get your personal regime working well. Best of luck and do take gentle care of yourself in this early stage of your journey. I will think of you and wish you only well. Love too. Coral

PS A Specialist and a GP should be a person that you can feel confidence in and ask questions of - someone you like. If not I would jump ship and find one you are comfortable with. Just saying!

Thank you so much for your reply from so far away! I've watched my family suffer too, and you just know when it's hit you as well. I had been feeling anxiety about the medication as well, and it's comforting to know that others on here are making you feel better about that. It's always great to get more information as well so you can make the right decision for you. I wish you all the best as well, and I hope that you can find relief! (I'm going to see what I can do about jumping ship!) Sending love in return, Jenny

Oh yes recall that overwhelmed feeling when first diagnosed, dealing with new information.Your reaction is typical and you will be able to cope better.

For personal reasons at the time I didn't start treatment straight away, but then had to asap.

So this time I was armed with questions after doing research on reliable sites NHS, Versus Arthritis, NRAS, I was fortunate to see an RA nurse who was brilliant in her replies, & explainations.

I started my treatment that day.

So the consultants diagnose & prescribe while the specialist nurses set out your care plan.

So try to get an appt with the RA asap.

Try not to think ahead what you'll not be able to do, it's unknown at this point & life is still possible albeit with few bumps along the way.

More a case that the journey requires a few detours & rest breaks.

Hang in, come & share here the support is very kind I find.

BeMindful profile image
BeMindful in reply to Happy5

Thank you, this is also extremely helpful hearing how the information/treatment is given. It's hard to not think of what I can't do as I face it so often throughout the day. For example, I gardened for 2 hours at work today (all I can manage), and it's taken me a couple of hours to finish replying on here because I keep having to take breaks from typing. Something so simple made frustrating. I will try though, because I don't want to feel so lost. I like how describe the journey :) The support IS very kind, and it's made a world of difference already! Thank you so much!

Happy5 profile image
Happy5 in reply to BeMindful

Gardening is my life and yup now like you have to limit it. I've set up small raised beds which I can put plants in with my grandson which has been

a joy, and become a pleasure for him.

I now do an hour at a time consisting of jobs I did in no time :(

Step at a time :)

Hannah-NRAS profile image
Hannah-NRASModerator

Hi BeMindful,

First of all, a HUGE thank you to every single one of our community members who have replied sharing their experiences and support here, you guys are what drive us here at NRAS and it's a privilege to be associated with each and every one of you.

Secondly, if you feel you are struggling to be heard by your rheumatologist, one thing that can be really helpful is keeping a symptom diary which can promote better conversations with your healthcare team.

Diaries are useful as they provide a sort of objective proof of what is going on, which means that when you speak to a healthcare professional on a good day (or your bloods appear "normal"), that the negative experiences not seen by them are not left by the wayside.

It can also act to give a more complete picture beyond what medical tests (such as blood tests) show.

A good rule of thumb with this type of tool is to consider all information about how you’re feeling and what you’re able to do (and what you’re struggling to do) relevant and useful. More information can only be a good thing!

Symptom diaries can include things like:

An indication of your daily pain levels – e.g. pain is a 7 out of 10 on Tuesday.

o This can also be done for other symptoms such as fatigue (e.g. the impact on your day such as being unable to do the activities initially planned).

o Noting the location of pain is also recommended.

Details of methods and effectiveness in controlling pain (including pain medications and quantities used, and things like cold or heat therapies).

o How effective was the intervention at managing your pain?

Noting good days and bad days

Things that exacerbate symptoms.

General thoughts and feelings about your condition.

Adding pictures to this can also be a powerful tool in your repertoire (for instance of swollen joints or changes in the appearance of the joint).

Infections or other changes in your health and how long they lasted.

We also have a wide range of resources available on our website to help support you in understanding RA and how it affects you, and have even recently launched an e-learning supported self-management programme! What is important to remember is that while RA is chronic, it is manageable but that this process can take a frustratingly long time! We get it, and we're here to support you if ever you need us.

I hope you find this information useful and wish you all the best. Should you require any additional information or support please contact our helpline on 0800 298 7650 (Mon-Fri, 9.30am-4.30pm) or email us at helpline@nras.org.uk

Best wishes,

Hannah - NRAS moderator & Information and Support coordinator

Hi Hannah, thank you so much for your reply!

The information on the symptom diary is brilliant, and I started yesterday. Do you know a good app for Android to track? The only ones I can find are day to day, but I find at different times of the day my RA changes. Though, I know I can make notes, it would be helpful and less painful to input.

I saw an advert for the e-learning programme, so I will definitely sign up for that too.

I really appreciate you taking the time to reply to me.

Best wishes,

Jenny

Hannah-NRAS profile image
Hannah-NRASModerator in reply to BeMindful

Hi Jenny,

No problem at all! Glad to hear you're interested in our supported self-management programmed and that the symptom diary is proving a useful tool for you :)

nras.org.uk/resource/ra-mob...

Here are the best apps that we've identified and collaborated on the design of.

I hope this helps.

Wishing you all the best,

Hannah - NRAS

I'm just sitting back down to reply to more of you now that my hands will allow. Over the weekend, I had a flare up in response to the stress. I just wanted to say thank you for all of the responses I've received. I can't thank all of you enough, and when I am further down the line, I look forward to replying to someone else to help them too. All of you are truly lovely people <3

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