Hi all. Thanks for having me - I feel totally alone and have nobody to talk to.
My very first symptom was a sore/stiff shoulder with no cause. (Though I experienced sore wrists 4 months prior to that. I thought maybe carpal tunnel at the time.) That was about 6 months ago. It escalated quickly to fully body pain. Worse in the morning. Improved during the day after some ibuprofen, and terrible pain at night.
It went away for about 1.5 months, but stiffness in my hands remained a constant.
3 months ago, it came back more severely and hasn't gone away. Terrible pain in both of my hands, and alternating arthritic pain. Sometimes my knees, ankles, jaw, shoulders, you name it. I cannot function without painkillers.
I asked my GP for blood tests for rheumetoid arthritis. They came back normal. So I demanded an appointment and had a follow up. He then gave me a blood test for C reactive protein. And he gave me a prescription for diclofenac. The medication helped slightly, but not really. The bloodwork ALSO came back normal.
He has told me that cannot give me a diagnosis, and recommended healthy eating, and stretching. He said that we can repeat the tests in 6 to 9 months. He didnt want to give me arthritis medication without a diagnosis, because it can be very toxic.. In the meantime, I asked how much ibuprofen I can reasonably take. He said 30 regular dose pills a month.
I'm at a loss. I need at least double that to be functional. I have 3 young kids that I can hardly pick up. Im a courier, and this pain is beginning to interfere with my job. But with no diagnosis, I dont have a leg to stand on. Knocking on doors, buttering toast, driving, you name it, causes awful pain.
I cant fully bend my index finger anymore.
I realize that this may NOT be RA, but I already have Graves Disease (another autoimmune disease), and my symptoms fit RA perfectly. More so than Lupus or other diseases I've researched. I dont know what else it would be. And he bloodwork would have shown inflammation, I think?
I am 32 years old and I'm trying to bargain with God to just let me live long enough to see my kids reach adulthood. This is so awful. How did everyone go about getting diagnosed? Does this story sound familiar? I am just totally hopeless. And the thought of no help for 6 months leaves me devastated. Any help or advice would be priceless.
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robinjeanine
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Welcome to the group. Sadly it is quite common for blood tests not to play ball so to speak. I was seronegative when first diagnosed but my GP could see my fingers, hands and knees were swollen so referred me to a rheumatologist and I was started on DMARDS pretty quickly. Now, 32 years later I am seropositive, and don't I know it. I'm sure someone will add to my little bit. In the meantime, have you visited the NRAS site? nras.org.uk/
Hiya robinjeanine, welcome. I empathise, you sound despondent. Your GP can't actually diagnose but he has done all he can following on from blood tests. When you say you demanded an appointment & was prescribed diclofenac do you mean it was with a Rheumatologist? If not then I would request you're referred, if so did he examine you? Why I'm asking is there are two types of RD, seropositive & seronegative... with the former the Rheumatoid Factor & Anti-ccp will come back positive & with the latter usually they come back negative or a slight value. What is important even when the two tests don't show the antibodies is examination & X-ray/ultrasound when symptoms such as yours (& your age) could indicate seropositive RD.
Can I ask if your GP was ok with you taking both diclofenac & ibuprofen? It's just that both are NSAIDs & I would have thought you'd benefit from one NSAID, maybe a different one, & possibly appropriate pain relief as the slightest thing causes you such pain. Also, are you prescribed a PPI (stomach protector) such as omeprazole? If not do please ask to be, both diclofenac & ibuprofen can be hard on the tum especially when taking regular doses, even if they are enteric coated you'd be better off with a PPI. It may mean you'd have to stagger the taking of the diclofenac but better to be covered than risk gastric ulcers.
Have a read through this, see if you think all bases have been covered
Scenario: Suspected rheumatoid arthritis. How should I manage suspected rheumatoid arthritis?
Refer people with persistent synovitis with an unknown cause to a rheumatologist for an appointment (within 3 weeks of referral) for specialist assessment.
Refer urgently, within 3 working days of presentation (even with a normal acute-phase response, negative anti-cyclic citrullinated peptide [CCP] antibodies or rheumatoid factor) if there are any of the following:
Small joints of the hands or feet are affected.
More than one joint is affected.
There has been a delay of 3 months or longer between the onset of symptoms and the person seeking medical advice.
Do not delay referral if blood tests are normal or results have not returned from the laboratory.
Consider offering a nonsteroidal anti-inflammatory drug (NSAID) at the lowest effective dose for the shortest possible until a rheumatology appointment is available — for example, a standard NSAID such as ibuprofen, naproxen, or diclofenac, or a coxib (such as celecoxib or etoricoxib).
Take into account potential gastrointestinal, liver and cardio-renal toxicity, and the person's risk factors, including age and pregnancy.
If an NSAID is prescribed, also offer a proton pump inhibitor (PPI).
Do not prescribe a glucocorticoid (oral steroid eg prednisolone) in primary care before a specialist assessment is carried out — glucocorticoids may mask key clinical features of rheumatoid arthritis and delay diagnosis.
My GP prescribed the diclofenac while we were waiting for the protein bloodwork to come back. Upon my next appointment, he didnt refill it as my bloodwork was normal and the diclofenac hadn't really done much. It was the coated version. And he advised me to not take ibuprofen at the same time.
Thank you for your reply. I have alot going on right now so it's hard to be more in depth. But I think my next step may be a walk in clinic (I'm in canada) and demand a referral. It can't wait any longer.
Ah, I didn’t realise you weren't UK based. I do wish Healthunlocked would add a flag or origin of members beside usernames, it would save a lot of time in posting! The guidelines win't necessarily apply then, maybe the CRA site would give you the correct info?
Meantime I do hope the walk in centre is able to help, you certainly appear to be in need.
Something I meant to say is if you have one autoimmune disease they do tend to gather to party. I really do hope that it turns out you don't have RD but if you do you'll be more than welcome to come back to us.
Have you asked for a referral to rheumatology? GPS are not very clued up about RA but I am horrified that they are content to leave you in such pain. If they won’t refer you then you can complain via PALS or pay to be seen privately if that’s an option for you. I would lay it on thick with the GP. Remind them that, should it be RA, the patient pathway is for rapid treatment with DMARDS to begin within 3 months to preserve joints. Also, your despondency could lead to depression. Good luck xx
So sorry you're suffering and not getting much help from your GP. I agree with the others who have replied; you really need to push your GP to refer you to a Rheumatology specialist. If the GP won't do that or the wait time is long, you could pay (if you can afford it - about £150 for initial consultation?) to go and see a Rheumatology Consultant privately to get a proper diagnosis then transfer back to the NHS.
Yes. A referral to Rheumatologist. They see this all the time. They would be better able to make a determination of what is going on and medication to control your pain.
Me too been on your journey it took 3-4 years to get RA diagnosis as nothing showing. if you can afford it maybe private rheumy to examine you. X rays from local GP of parts that are bad. You have to be persistent and you will feel ike you are going mad and no one is listening.
Call NRAS they gve advice and ways to tackle this too.
As a communty we listen we give ideas and support as in the way of knowing your frustration.
I have sero negative RD and had a battle on my hands to be seen initially and then get the diagnosis.
A private physio I saw wrote to my GP suggesting I needed a rheumatology appointment, the GP then referred me on the basis of his email. Months were wasted. You could try this approach, but personally if it were me again , I would just tackle the GP head on. I've learned.
I use a number of techniques now with everyone I see in connection with my RD, no matter what for. The standard of my care has improved greatly since doing this.
Firstly always take someone with you if you can to every appointment, your partner, family member, a friend ...anyone, you are less likely to be brushed off if you have a witness.
You can write / email your GP / GP practice, they don't like things written down , as it requires a written answer or action, I don't take a verbal reply to a written issue.
Ask questions, lots of them.
Write your questions down and ask for them, with the answers you have written down during the appointment, to be submitted into your medical notes.
Questions might be along the line of:
You have taken bloods that are negative, does RD always show in the blood ?
So I definitely don't have RD ? (act stupid) ?
Ask directly could I have sero negative RA? ( if not why not?) (If yes, can you refer me to a rheumatologist today?)
If needed, state clearly ' I am not satisfied with your response today'......' I would prefer a referral to a rheumatologist '......'Can we be clear, are you refusing to refer me '?
I have a big orange note book that I take to every appointment, my partner writes down everything that is said. I have asked the Dr to slow down so that we can take adequate notes in the past. My partner asks lots of questions too.
They really don't like it and have asked what do you want ?
To which I answer clearly what I want....this approach resulted in my diagnosis, (I got my MRI scan) which then resulted in a letter from the rheumatologist saying my care had been 'sub optimal '.
Or, see another GP, but take a very direct approach.
I always add to people on this site, you would most probably not accept poor care from a plumber, shop assistant or anyone else you have paid for a service from.....Drs are just ordinary people. Most GPs don't really understand RD.
Remember you have already paid for your health care through your taxes, so don't be afraid to say you are not happy with the service being provided.
Your practice being busy, underfunded or whatever...is not your problem. Forget all that and expect good care, you will be more likely to get it, if you expect it.
Stay strong.
Don't accept, question, be polite but firm and direct.
I hope you don't have it, but seronegative RD can be an absolute bummer to get diagnosed unless you have a good GP and rheumatologist.
A lot of people have those awful symptoms and test negative for RA. But I think they usually have a high C reactive. My Rheumatologist’s makes all his patients go off Gluten even if they don’t think they are allergic to. Most of the food allergy tests don’t work. Gluten is one if the highest inflammatory foods out there. I am allergic to gluten and if I have any my joints hurt for three days, my neck is so sore I have to wear heating pads. I suggest you go off high inflammatory foods for a month and see if you get dome relief. But you can’t cheat. It’s all or nothing with gluten. You could have a lot of different autoimmune diseases and I hope you get to the bottom of it. The meds are very toxic. But the pain can be unbearable.
I have sero negative RD, all my bloods are normal except my WCC. I show no inflammitory markers at all, it is not unusual. My CRP is normal.
With all due respect your rheumatologist suggesting that all RD patients undertake a gluten free diet is unnecessary, absurd and shows lack of knowledge of dietary matters.
Gluten allergies can be tested for through an exclusion diet or blood tests which are accurate. Most RD patients are absolutely fine with gluten.
Going gluten free without the need too is dangerous unless education is provided to the patient on dietary requirements. I assume your rheumatologist provides this for all patients ? That is a lot unnecessary dietary referrals ?
Exclusion diets require knowledge and education, it's not something the majority of people can just 'do'.
Shop bought gluten free foods are highly unhealthy, look at the list of ingredients on the back...preservatives...oils....they tend to have very long shelf lives due to the high preservative content. Long shelf food tend to be unhealthy and best avoided.
Eating fresh food, lots of fruit, veg, pulses, fish a little meat (or substitutes if vegetarian)...a good mixed diet, preservative free is best, avoiding anything that upsets you ( sugar for me). Otherwise seek out dietary advice from a dietician.
I don't have RA, I have ankylosing spondylitis. I presented fairly similarly to you: my bloods were always completely normal, I was complaining of pain in fingers, ankles, knees, neck, jaw. I did get pain in my back, but as the pain appeared when I stood for any length of time (maybe 5 minutes depending on surface I was standing on) and also my hip was sore on waking, but that would wear off after a few hours, I never mentioned this to the GP. My main issue was crippling fatigue. For 25 years I was incorrectly diagnosed with ME and left to fend for myself as repeated CBT and different antidepressants had no effect. I know for a fact that one of my GPs thought it was all in my head (he told my father this).
My experience is that with your limited time with the GP it is difficult to get across the full impact and symptoms - it's pot luck whether you will actually name the right symptom to get the diagnosis!
In my case, a GP finally asked me if I ever experienced back pain and then tested me for the hla b27 gene, which I was positive for. Even then I had to fight to get a referral to rheumatology. Once under the rheumy, she performed all the same blood tests again (all still completely normal) and then x-rayed my hips and spine (also normal). She wrote to my GP that she was at a loss as to the cause of my symptoms and would be ordering an MRI "for completeness".
The MRI showed masses of inflammation throughout my sacroiliac joints, in my spine, bulging discs - it was all a bit of nightmare in there! She said if I didn't start taking the biologic medication pretty sharpish, I would be fused in 5, maybe 10 years. Yet, acording to my bloods I was perfectly healthy...
So, yes, as others have said, seek a referral to a rheumatologist as they can perform further tests. Think very careully about all of your symptoms, even if they seem to be minor as they could be the key to diagnosis. I didn't realise I was describing text book AS (as I'd never heard of it!) and I was very lucky that the GP I saw that day knew about AS - apparently many never come across an AS patient during their entire career.
Wishing you best of luck with getting a diagnosis and the correct medication!
I am Seronegative RA with other positive markers. It’s a lot different here in southern CA US. Almost all restaurant show gluten free. Most doctors talk about nutrition and everyone thinks they are an expert on nutrition, lol. I was tested several time for food allergies by s lot of different labs over the years and always tested positive for wheat. But lots of other positives would show negative on another test the most accurate in my opinion after spending thousands of dollars is a lab out of Arizona. Our Wheat is different than most countries and has been GMO to contain more gluten. The last page of my baby book said take her off wheat. Doctors would say go off it for awhile then you can have it again. Well I am addicted to it and couldn’t wait to start up again. It did a lot of damage to my body. Anyone can go without gluten without any adverse effect is still eating nutritious. 18mill in the states suffer some sort of intolerance to gluten. Our Wheat is highly inflammatory. I don’t eat Gluten free crap. I eat regular healthy foods.
Sorry to hear of your pain. The replies here have provided the necessary answers. So very hard when everything reads normal and you know you are not. Push push push as said, don't leave it. Did they do a CRP or CCP test? I went private and had the latter which gave me a definite diagnosis for RA.
I pray you are able to heal quickly and your pain subside 😌
I was negative for RA. Rheumatologist doctor said I definitely had RA as I had all the symptoms and swelling. She said it doesn't always show in blood. Hope this helps
Thank you everyone for the replies. It's nice being listened to and given empathy.
I actually love my doctor. Hes been my GP since I was a child. But nobody is perfect and he may be out of his league. I will go to a different clinic and demand a referral to a rheumetologist.
I cant reply in depth at the moment. My van was stolen yesterday so I have things to deal with. But I've read all your replies and will answer more later. I'm sorry you are all going through health problems. But thank you for the help. Sometimes we need someone to lean on who understands.
Will update later.
robinjeanine sometimes just knowing we are here and listening helps too x
YOur GP is ignorant. Normal bloodwork does NOT rule out RA or another inflammatory arthritide. You need to either go back to your GP and ask for a referral to a rheumatologist, or go to a new GP. A rheumatologist will assess you properly, perhaps take x-rays or ultrasound to see if there is any sign of bone erosions (x-ray) or synovistis (ultrasound). These are cheap investigations. MRI can detect RA changes earlier, but its more expensive. At the least your GP should trial a course of prednisone to see if it improves your pain. This will be valuable information for your rheumatologist. Please see another physician. I'm sorry you're going through this. But if it IS RA, early diagnosis is key. Wishing you the best.
Has your doctor ruled out polymyalgia?
I started with that.
Only other advice I have is to keep knocking on the health prople’s door!
Problem with no diagnosis is that you have no starting point. As your own doctor is now you, may I suggest ncbi.nlm.nih.gov and see if there is any info there. Try also drpaulclayton.com and see what is what. Google Dr Sircus IMVA. Can give list of books if you are interested.
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Disagree with RA diagnosis - where do I go from here?
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