Bit of a long one but wanted to get my journey written out and have a bit of a brain dump.
Recently been diagnosed. I have had stiff joints for many years. when originally referred to rheumatology 6-7 years ago, it was mostly in my larger joints, which I noticed when exercising as they would click. No tests were done other than bloods, which came back fine other than a slightly raised CRP (this was quite high when I was diagnosed with a B21 deficiency and came down by half when I started B12 injections). The rheumy decided that it was hypermobility that was making my joints ache and click, and that it was highly unlikely to be arthritis as it would usually occur in the smaller joints before the bigger joints. They discharged me and said if it got worse then to be referred back.
Well over the next few years it got worse, I asked my doctor for another referral as my hands were getting particularly bad, but they wouldn't refer back as bloods came back fine, (CRP was still slightly above normal but hadn't really changed in the past year or so) and it was likely just the hypermobility. Then the pandemic hit, and I just sort of put up with it because I was home all the time and my doctor had left the practice and I didn't want to draw attention to the fact I was having monthly B12 injections that the previous doctor had prescribed. Well in Feb 21 a nurse questioned why I was having monthly, and decided to speak with one of the other doctors who reduced my b12 injections back to 8 weeks (originally said 12 weeks but I put my foot down on this and pointed out the guidelines etc). So I asked for another referral, and after they did bloods again and tried to fob me off that they were normal, they referred me.
When I saw the rheumy, he had a good feel of my joints and noticed some stiffness, and was very sympathetic. He was shocked that after being told I had hypermobility, I was not offered any information on how to manage that or physio or anything and told my docs to refer me for physio. He also ordered x-rays and an ultrasound of my hands, because this was what was particularly getting worse. Well the ultrasound came back showing mild synovitis in all my hand, finger and wrist joints.
When I eventually saw the nurse (I originally had a phonecall appointment but I was at work with shoddy signal and missed the first few rings - but they didn't call back and I had to wait another 3 months for another appointment through the post), she went through the 3 DMARD options, side affects etc. The way it was told to me - Hydroxychloroquine was the mildest, then methotrexate, then sulfalazine (sp?) the strongest. I was asked what I wanted to try. I went with the Hydroxy because mild synovitis - mild tablets to start right? I am on 2 tablets a day one morning, one night.
Obviously since the appointment I have done some reading (I wasn't told specifically its RA but when searching synovitis and hydroxy etc that's what it seems to say, and as someone who has problems absorbing b12 which is also autoimmune I am guessing that this is a fair assumption to make? The nurse pointed me to Versus Arthritis and said I would be on the medication for life (depending on what worked) etc. I have now been on Hydroxy for about 6-7 weeks but haven't noticed an effect yet.
Should I be asking outright and getting it written to the doctors that I have RA rather than just "synovitis"?
As for dealing with it generally, I work full time, I have quite a bit of fatigue (which I've had for years and thought was B12 related but a year of EOD injections its the one thing I can't really shift), I get out at least once a day for a short 20-40 minute walk with the dog, if not twice a day, and I just generally ache.
Physio have given me some exercises for strengthening my hands and for the hypermobility in my knees and ankles, but have suggested I ask for a rheumy specialist physio appt to see if there is anything I should be doing specifically or if I need insoles or splints/supports or anything.
My partner tries to be supportive but really just doesn't understand. I think he is undiagnosed ADHD and as much as he says he should see a doctor, he just doesn't, and I can't force him to. Though if I hear that I should probably just go to bed earlier when I say I am tired one more time, I will lose it. He just seems incapable of understanding as he hasn't experienced it. He is constantly on the go and sometimes it is hard to keep up with him and everything he wants to do. He see's resting as wasting time. So I don't fully get the understanding there.
Guess its all just a bit of a brain dump and moan. I definitely need to learn to pace myself more, but it is hard when there is so much that needs to be done. Even when I am resting, I don't fully relax as I see the mess and the to do list and feel guilty I haven't done it or don't have the motivation to do it.
I'm sure you all understand it! Is there anything else I should be asking of my rheumy or nurse? I am due to see the nurse at week 12 of medication (with bloods around week 10) but I've not had appointment through yet. But I want to get everything written down ready to ask at the appointment.
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Bowtruckle
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Hiya & welcome to the NRAS site Bowtruckle. You've had a bit of a time of it, & your first Rheumy appointment seems to have wasted so much of it.
Re meds. Unusual placing… MTX is considered the gold standard, HCQ is usually suggested if symptoms are milder or less widespread. It was my first DMARD, I was diagnosed promptly & symptoms really only in my feet. SSZ is less usually suggested as first line, but that's not to say it isn’t, it is different in that it's a DMARD made of two components, an anti inflammatory & an antibiotic. It's not the strongest by any means so at a loss why you should be told such.
Re asking for official diagnosis. What I would do initially is request a copy of the report/letter your Rheumy has sent to your GP. This should lay out all thoughts of diagnosis/prognosis & suggested meds etc. I'd recommend you request to be copied in on all appointment correspondence, that way you have proper reference (DAS score/disease status, med dosage changes etc) & can return to it as often as you need.
You don't mention but you are having drug monitoring bloods aren't you? They are usually fortnightly to begin with, changing to monthly if all is well.
It is quite normal for those closest to just not get it basically especially soon after diagnosis. It’s probably as much of a learning curve for him as you, & probably feels incapable as well. My h always comes to my appointments with me which is a great help, especially afterwards & talking through what transpired. Have a look at the NRAS resources hub, you may find some useful booklets which may help him (& you) nras.org.uk/resource-hub/?f...
Lots more we can share so if there's anything that crops up just ask, we know how it is because we've been at the start of that learning curve! 😉
Thanks for the reply. Yes feels like I have been fobbed off for quite some time. I guess I feel its only mild because I still power through and can hold down a full time job and household etc. But that's not to say it isn't becoming more and more of a struggle. Unfortunately I can't reduce hours or give up work etc, But I am looking for a new role that hopefully would allow me to work from home at least some of the time. As much as they say it is a job seekers market, I definitely haven't found that to be the case.
Yes I have thoroughly read through the NRAS and Versus Arthritis sites. I also have access to all my records through GP online, so I know that the letter that was sent to my GP only says that the ultrasound shows I have mild Synovitis in both hands and wrists and I have been started on Hydroxy and a follow up appointment will be set for 3 months. It mentions nothing of a diagnosis or anything else going forward.
The nurse said that for Hydroxy, they usually take bloods before medication, which I had when I had the ultrasound and x-ray, and then a follow up blood test for about 10 weeks after starting hydroxy so that results would be through before my 12 week follow up appt. They said there wouldn't need to be any more bloods usually unless I changed to Methotrexate as that one needs monitoring.
Yes I can understand why he doesn't fully understand it. I guess I just know that I try to research as much as I can when someone close to me (or me) has a new condition diagnosed. Even when I say things I have researched its like it goes in one ear and out the other.
It's not always possible for him to come to appointments as unfortunately(fortunately) he works away quite a lot. It means I do get some time to recharge while he is away.
😂I will see if there is any that come up that he can attend with me though.
Something I omitted to ask, though you may be aware. Were you told to have an eye test? If not do, it's normal to have a baseline test done prior to or when just starting HCQ.
Yes the nurse mentioned I would need an eye test, but didn’t mention anything about booking one in. However i’m not worried by it because I actually had an eye test in February, so I wasn’t that long ago.
NMHs suggestion to get a copy of the letter that goes to your GP is one I echo - although it can take some weeks.
But I wouldn’t get too hung up on a specific diagnosis. Inflammatory arthritis comes in many forms and often very hard to distinguish between them. Have you had anti-CCP and Rheumatoid factor blood tests? If so results will be in the letter too most likely. They have you on a treatment plan. There is the monitoring in place, so see what next period brings. You need to be patient with this disease.
Many people have found that the spoon theory helps their partner understand - google it. Mine didn't! But has finally grasped that I need to look after myself in a different way now.
Sleep is critical, but so is exercise. Simple not highly processed food. Lots of water. If you smoke, then stop! Reasonable alcohol. And the most difficult one, try to avoid stress!
(Edit - I see yiu have the letter. Are the blood test result in your online space too?)
Hi Thanks for this. Unfortunately the bloods done by Rheumy aren't in my online account, this is because my GP is in Leicestershire and Rutland district, while my referral is for Warwickshire district, as we live right on the border for both. I can certainly get a copy though next time I go. The results were not in the letter though. I was actually a little disappointed that there wasn't a bit more detail in the letter. As someone who has had to learn a lot about Pernicious Anemia and B12 Deficiency because I was not being listened to, I have had to buy my own injections to do. The doctors just will not listen or deviate from the 'official guidelines'. Needless to say it has made me a little distrustful of doctors (especially GPs who can't be expected to know everything about everything) so I do so much research myself. This is tiring though, and at this point, I just wish I had a doctor that just says lets do this and that and knows what they are doing. It seemed like this was the case when I first saw the consultant, but I guess the way the medication was explained and the vague letter to my doctor, just makes me wary that I'm going to have to do all the hard work myself, convincing doctors and trying to persuade them to treat me properly, and just not sure I have the energy to do that with another disease, having had to do that already.
My GP has already ignored specialists they referred me to with regards to the B12 deficiency and injections, so without a letter explicitly stating a diagnosis from the specialist to the GP, I guess I worry what may happen down the line in a few years etc.
Also yes I did have anti CCP and Rheumatoid factor ones done, and they both came back fine. (I'll have to ask for the actual results this time around I think). When I had them done the first time around (6-7 years ago) they were both within normal range.
The great advantage of having positive anti-CCP and RF is that it makes it harder for doctors to ignore you! Having a sero-negative inflammatory arthritis is twice as hard, keep pushing.
As HH said, don't get hung up on a diagnosis of RA. I was diagnosed with psoriatic arthritis and my CRP is always completely normal ( as is the case for 50% or more of PsA patients), my RF is also normal/negative. Most people with PsA also have psoriasis (which it turns out I developed over 40 years ago, but it wasn't diagnosed as such) but some peopl never get it, or develop it after the arthritis symptoms start. And there are other inflammatory arthritis possibilities...
Please don't apologise for dumping your concerns here or having a moan - it's what we're here for and we all need to do it from time to time. You've had some excellent advice from others already and I would follow up on it if you can.
You may be interested to know that I was diagnosed with RA when my larger joints (not fingers which is more usual) were causing me problems.
I had some problems many years ago with feet (bunions), ankles (which I have kept spraining since I was a child) and knees, but was told it was all due to osteoarthritis. I had researched hypermobility a number of years ago and using the Beighton Criteria I diagnosed myself! (My current Rheumatologist has since confirmed it and was most impressed that, even with RA in many joints now, I can still put the palms of both hands on the floor keeping my knees locked straight!).
But back in 2018 it was problems with my shoulders (so large joints) that my GP thought could possibly be RA related so she referred me to a Rheumatologist. I did not have the typical 'sausage fingers' of many RA sufferers. I was having difficulty raising my arms and could not toilet or wash myself properly, nor brush my hair and getting dressed was also very difficult! I had also been struggling with fatigue for some years previously but kept telling myself it was my very demanding job and busy life. After examination and blood tests (showing very high ESR and CRP) and including anti-CCP and RF I was diagnosed with sero positive Rheumatoid Arthritis and started on treatment.
So I do hope you can get some answers and more help soon. Meanwhile, try to reduce your stress as much as you can, continue with gentle exercise but also rest too when the fatigue hits you. Try to get plenty of quality sleep (seven or eight hours minimum) if you can.
I hope that by showing your hubby our replies and introducing him to Spoon Theory he will begin to understand that you need to make some adjustments to your daily routine and be supportive.
Thanks. Useful to know there are others where it started in the larger joints. I try to make sure I get plenty of sleep. Unfortunately my parter doesn’t sleep too well as he fidgets a lot. 🙈 next thing on my list is to buy him a weighted blanket. I think that will do wonders for his sleep and then in turn mine 😂
Have you had any support for the hypermobility? You might like to tap into the Ehlers-Danlos support groups as it is very common for people with hypermobility to have early onset of arthritis.
As for blood tests from the rheumy, ring up the secretary and ask for them, saying you want the actual results. Unlike GPs, secondary care seems reluctant to give us our data!
Like you I have been fobbed off for several years, but unlike you I have been given no options for which drugs to try, I am just told what I am going to be given. So I am glad you at least have people now willing to discuss things. Although that brings its own problems as in order to make best choice for yourself you need to have all the information.
I am sorry to hear though that your partner isn't supportive. Did you know this is a theme that goes all the way back to Hippocrates? The first written description of hypermobility was done by him, and he described the people as being lazy and riding their horses everywhere when they should have been walking!
So maybe next time your partner is less understanding tell him to get off his high horse!
Hi, thanks for the reply. I haven’t had any support with the hyper mobility until now. The first rheumy 6years ago just said, that’s what you have, off you go, essentially. As I think I said, this new rheumy seemed shocked I hadn’t even been referred to a physio for support. I have recently see the physio and she has given me some exercises. She did say I need to be very careful with knees and ankles as this is where the hyper mobility is worst.
And I did not know that, but will definitely keep that retort in mind.
He definitely means well but I guess if you aren’t dealing with it every day it’s hard to know what someone is going through.
As others say, I wouldn’t get too hung up on diagnosis at this point. There are many inflammatory arthritis forms and it can take quite a time, narrowing down which one. I have ankylosing spondylitis which although predominantly affecting the spine, can affect other joints. I literally have it in every joint except elbows and wrists. As Ascidian says 50% of patients can have normal inflammatory markers. I’m negative for RF too. Despite normal inflammatory markers it has also affected my heart and lungs. I’ve lived with it for 25yrs before diagnosis, and was seeing different rheumatologists for 4yrs before I was eventually diagnosed. Over these 4yrs I was treated with steroids and dmards to manage symptoms, both of which treat the majority of inflammatory arthritis’s. So even without a formal diagnosis you are on the correct treatment. I also agree with others that your nurse seems to be misinformed as MTX is the gold standard, and Sulphasalazine works slightly differently and is normally an add on to other treatment. Re work it may be worth seeing your occupational therapist, they can recommend adjustments to make things easier. It may be more frequent breaks, changes in hours worked, or equipment to make things more manageable. They are very supportive, and keen to do their bit to keep you working. 🤗
Thanks, yes I’m defo going to be asking about mxt next time. We’ll see if I notice any difference with the hydro first. Only another month to wait. Re work we are a very small team so anything I don’t do I have to end up doing anyway. There’s no one else who can do my job. Although I can pace myself, and I have bought a new keyboard and mouse which are more comfortable to use.
I am definitely looking for another role as I think that is the best way to go.
Omg you have had a lot going on , I started off like this , I new something wasn’t right Iwas told it was arthritis I thought if this is arthritis I wouldn’t like to think what RA is like , I didn’t feel any better I found it difficult to walk due stiffness in my feet and hands , 9 months on finally got diagnosed and it was RA , I have certainly been through it , had to leave my job - three years after I fractured my back badly , then covid , three years on again no further forward with back can hardly walk , I’m sorry to say partners don’t understand, if my husband had this he wouldn’t cope , the only people who know are us . I changed my first consultant as he just kept me on steroids which has been terrible, I would say we all know our own body and pain. I did nursing myself and was always told is pain is where the patient says it is , so please listen to us . I hope you get some support and your pain eases soon . 👍
Good morning. If you would like support, information or just someone to talk to, our NRAS helpline is open every weekday from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Or have a look at our website nras.org.uk. Kind regards.
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