Feeling anxious

[Chelle82]

Hi all I'm new to the group! I haven't been to rheumatoid specialist yet, I have been having throbbing pains in my hands, wrists, shoulders for a while, also my knees, ankles etc I also have carpal tunnel syndrome! I went to the docs because pain has been unbearable, he gave me strong co codamol which tbh hasn't even touched the pain! My gp thinks I have rheumatoid arthritis and took bloods, I have since phoned, all bloods satisfactory other than I have low folic acid! I have go later today but I'm at a lost! I'm in agony, swallowing pain killers like smarties and bloods haven't shown anything! Is anyone else like this? X

[Simone_Holly]

Hello, sorry to hear you're in pain, it really is awful and affects so many parts of your life. I hope you're getting good support from people around you. It's good that your doctor is investigating your condition, whatever it turns out to be, RA can affect every joint and cause extreme pain, and hopefully once your illness has been identified they can get you started on the right medication. Good luck! X

[Chelle82 in reply to Simone_Holly]

Thank you for the reply! I haven't really talked to anyone about it, I'm only 32 with 3 small children to run around after, if it is RA its a very scary thought! I know there are plenty of

Medications to deal with it but I'm already living with PCOS, hard to swallow when something else is wrong x hopefully gp will have some ideas tonight when I see him

X

[Simone_Holly in reply to Chelle82]

No worries! I'm 31 and only recently diagnosed and haven't really spoken to anyone either, so I sort of know how you feel. RA can feel scary, I'm sure there will always be the odd time it feels too much, but I'm reassured that its mostly manageable with meds and time spent getting used to what we can and can't do. Hope the appointment goes ok, you know where we are if you need us! X

[Barrister]

You can have Sero negative RA or it may be some other type of inflammatory arthritis. I was originally diagnosed with sero negative RA, then it was revised to Psoriatic Arthritis but now I have Spondyloarthropathy and getting treatment. So don't despair, it can take a while to get a diagnosis. Clemmie

[Chelle82 in reply to Barrister]

I'm a very impatient person, I want to know what's wrong now lol I think the worse bit is your mind plays a lot of tricks and I think sometimes knowledge is bad x hope u are all well x

[nomoreheels]

I'm very sorry to hear that you don't seem to have many answers Chelle82, coping with pain is difficult especially as you're a busy mum but it's worth persevering because as Clemmie has already said a seronegative diagnosis tends to be tricky to pin down straight away, not always easy for GP's to pick up on it. If it was me (I'm seropositive so it was clear I had RD) I'd be pushing for further investigation or referral to Rheumatology. For the time being though it could be an idea to ask your GP if he could prescribe an NSAID (& a stomach protector, omeprazole or the like). As carpal tunnel had been confirmed there's evidence of inflammation which is causing the median nerve to be trapped.

Low folate levels wouldn't have any bearing on how you're feeling I wouldn't think but if your GP hasn't offered to investigate this further ask if a folic acid supplement or another check for anaemia is necessary. The folic acid supplement would probably need to be higher than what you would take in early pregnancy so, again, ask if your GP could prescribe some for you as he thinks necessary.

One thing I would say is that if you are diagnosed with a Rheumatoid Disease you'll learn to be patient as most RD meds do take some time to work. That said once they reach potential DMARDs can be very good at controlling the disease.

It might help you if you have a look at the NRAS website nras.org.uk. If you're looking on the internet for help please do keep to reliable sites, you'll scare yourself silly unnecessarily if you wander onto some of the less reputable ones! We'll always be happy to help here if you have any other questions or if you recognise any other symptoms, it may help to state your case to your GP for referral. One thing which would make me question the possibility of RD is that you have PCOS. There is a train of thought that hormones can play a part in autoimmune diseases as can family history so it might be worth asking if any other family members have the disease.

Hope this helps. Good luck & let us know how you get on.

[Chelle82 in reply to nomoreheels]

Feeling a bit deflated after the visit to doctors today as I felt he was fobbing me off! He has given me naproxen and omprisole and the strong cocodamol for the pain but said to come back in a few weeks if the pain hasn't went away! He said it could be viral....it's always viral lol he said he would refer me to a RA specialist if the pain hasn't disappeared then!! Glad I got more pain killers as I have been in a lot of pain and its becoming unbearable to the point I'm in tears most of the day because of it! My dads sister and her son both have RA which I told him today aswell, it's just a waiting game now x

[nomoreheels in reply to Chelle82]

I'm sure you do. It's well known the earlier the diagnosis & treatment starts the better the prognosis so if you feel no different by next week I would see him again, I wouldn't wait a fortnight, or if you're not assigned to one GP in the Practice you could try to make an appointment with a different one.

Along with my other meds I take co-codamol 30/500's & find I get the best results taking them at regular intervals as directed in the patient information leaflet. Taking them regularly it keeps the dose topped up & I'm less likely to have peaks & troughs. The fact your aunt & cousin both have RD (I prefer the term Disease rather than arthritis) is telling.

To give your GP credit there have been some virulent viruses around recently but "cause unknown" is too frequently used. Do you have any swelling at all in your hands or ankles? It's not a prerequisite but if you do have any, or in your feet, that could indicate disease activity.

I know it'll be hard but try to rest as often as possible, don't try to push through the pain. Do you have a good support network to help you with your little ones? If so do ask for help with them if you feel you would receive some help.

Keep us updated & again if you want any advice we'll help. We can't offer specific medical advice, that's up to your GP, but we can help & answer any questions through our experiences. x

[Hidden in reply to Chelle82]

There was someone on here recently who was eventually diagnosed with Reactive Arthritis (I believe that's inflammatory arthritis caused by some infection) which usually goes away. Her relief was obvious. Could be that's what your GP means by 'viral'. Don't knock it - could be the best of a bad job if so!

But frankly, why not a referral now, why ever not? Appointments can be cancelled if you recover meanwhile. Rheumys deal with all sorts of inflammatory arthritis including those that are not chronic in nature. And waiting times for appointments can be long. With your responsibilities you deserve the most prompt treatment possible.

[lorraine1972 in reply to Chelle82]

Yes I'm new to RA too and it did take a lot of appointments to the gp before the referral,I'm afraid it almost feels like the gp has a tick list he has to go threw before he can refer you regardless of the pain you are going threw. My bloods did show inflammation but with you're family history it can't be long now before you pass the gp "tick list" good luck x

[Marcy9460 in reply to Chelle82]

Same thing happened to me Chelle82. My GP looked at me like I was crazy all the time. I begged him to send me to a RA specialist, which after many weeks...he did..and I finally got the help I needed. I've been on many medications, have blown out both knees with Bakers Cyst eruptions, knee drainings, Carpal Tunnel keeping me awake all night, etc...but I feel better now then I have in many years (over 5 years now). It takes time to get the right diagnosis, and your RA Specialist will get there, and I promise...you will feel better. Keep a log of what you're feeling everyday and bring it to your RA appointments...it will help your RA Specialist abundantly. I'm currently on Plaquenil, Sulfasalazine, Enbril shots, Methotrexate, Cymbalta, Folic Acid and Promethazine (to help me sleep). I have some bad days...but mostly good days.

[allanah]

I have PCOS , and diabetes and RA!!! They are like buses I got mine together , but on a more serious note it can take a while before you get a good diagnosis. Write a diary of your pain and where it is, take photos of any swelling or rashes and show these on your next appointment .

Ps I'm sero negative for RA too but have RA , good clinicians go on your pain and inflammation levels xxxxx

[Hidden]

I agree with others. If your GP thinks your symptoms are likely to be RA, but your bloods don't show anything, it could be another form of inflammatory arthritis. For example, many people with PsA (psoriatic arthritis) do not have elevated inflammation markers. You could of course have something other than inflammatory arthritis.

I expect you've had your GP appt. by now, what happened?

If he has not referred you to a specialist, then ask to be referred. 'Ask' as in 'I cannot handle this, I need answers and treatment. I think a referral is essential'.

Knowledge can lead to worry that is true, but you could try channeling the nervous energy into pushing for a referral and a diagnosis. We are all impatient but impatience doesn't change anything, perseverance often does. I wish we all had magic wands - we'd wave them about like crazy for you! You've got youth on your side right? Who knows what could happen with effective treatment - it could make a massive difference.

[helixhelix]

You also need to ask what actual blood tests they did that are "normal". Usually GPs only test for the Rheumatoid Factor (RF) which is the cheaper & easier test. But there is another blood test that can be done by rheumatologists that check your anti-CCP antibodies. This is a much more specific test, and quite a lot of us are negative for RF but positive for anti-CCP.

And also ask what your inflammation levels are (the ESR or CRP tests), as these also help make a diagnosis of an inflammatory arthritis or similar disease.

And see if they'll prescribe you some more effective pain relied and anti-inflammatories to tide you over.

But as Postie says I hope you asked for a referral and got one, as sounds like you need to see a rheumy to find out more.

[Jora]

I can't really add anything to what the A team above have said, but I do want to endorse the necessity for prompt diagnosis. If you find your GP tricky ( and I'm not impressed by the sound of him/her) could you take someone with you to bolster your assertiveness?

At the outset, it is rather scary and I can't imagine the difficulty in also coping with three young children . I have had to learn to ask for help (not easy when one has always been independent), but it is really important. It's good to keep moving a little, but rest is crucial.

All the best

Jora

[Bailybiscuit]

Your hands and wrists sound like mine and my blood tests were normal. I was told I have Seronegative arthritis and take hydroxycloroquine, not that I think it is working.

[Tillytop]

Hello Chelle

I'm so sorry you are struggling so much. It always makes me furious when GPS delay referring people to a rheumatologist when early diagnosis and treatment is known to make a huge difference to the long term outcome. The governments NICE guidelines for managing suspected rheumatoid are very specific about when a referral should be made and from what you have said about your symptoms it seems clear to me that you fit the criteria for urgent referral. I have put a link at the bottom of this post to the relevant part of the guidelines which hopefully will work for you. If not typing 'NICE guidelines rheumatoid arthritis' into Google should take you there. I would be minded to go back to your GP as soon as possible and show him the guidelines, tell him you believe you meet the criteria and insist on an urgent referral. I do know that when we are struggling so much it can be hard to be forceful but it is so important because early diagnosis can make a huge difference. Although RA isn't exactly a rare condition GPS apparently learn little about it during training and it may not be something your GP has come across before. Many GPs stillbelieve that RA can be definitively diagnosed with a blood test and will not refer patients if they consider the blood tests to be normal. RA is not easy to diagnose because there is no single factor which confirms it which is why a specialist is needed to look at the whole picture. When my RA was diagnosed many years ago now, even though I could barely move and had pain in almost every joint, my initial blood tests were normal and I had little visible swelling. I had hardly heard of RA , NICE guidelines didn't exist and my local hospital rheum dept wouldnt even see anyone whose bloods were negative for rheumatoid factor! But things have come on in leaps and bounds in the past 20 years even though some GPS still aren't up to date with current knowledge about RA which is why I think so many people still miss out on early diagnosis.

Sorry such a rambling post but really good luck with getting a referral and I hope so much you get some help soon.

Tillyx

Ps The NRAS helpline may be able to give you some advice about pushing your GP for a referral. They are very easy to talk to and very knowledgeable.

pathways.nice.org.uk/pathwa...

[Tillytop in reply to Tillytop]

I have Just had a look again at the NICE guidelines and it states that patients meeting the criteria should be referred to a rheumatologist service 'within three working days of presentation'. It also states clearly that GPs should not avoid referring people based on negative blood tests. So, if you fit that criteria, declaring it 'viral' and telling you to come back in a few weeks is completely unacceptable. If you feel you can't face talking to the GP again, maybe you could write him a letter enclosing the guidelines and drop it into the surgery for his urgent consideration. Good luck x

[Chelle82]

Thank you all for your replies and support! After a few days of being on naproxen, I'm still not feeling any better! My right wrist and thumb and shoulder seem to be the worst areas just now, my left is also sore but no as much! I am so stiff after sitting for a while that I feel like an old lady! It is really getting me down! Thank you Tilly for the link! I am going to my gp on Tuesday and demand(politely) that I think I need a referral, because I can't go on like this x

[Chelle82]

My gp said that the inflammation in my blood came back that it is within normal ranges?? I have carpal tunnel syndrome aswell...how can this be? Is this the same for anyone else? X

[Doughnut61]

Ok this is my story I went to GP three times over a year with similar symptoms as yourself. And to be told my bloods showed no sign of RA. I paid out a lot of money on massages chiropractor relaxation classes !! Saw a Physio 3 times to be told I'm very stiff and need to loosen up more. I ended up in such pain one morning I couldn't even open my hands , my wrists and feet were so painful I felt 100 years old - In the end I demanded to be referred to Rheumotology - at last I was tested for anti ccp and was told my RA was very aggressive and was blasted with drugs - thankfully even though the drugs are horrid I feel blessed that I am not crippled in a wheelchair 👏 Long may it last . Wishing you good luck 😘