Hi Everyone. I am a 21 year old female, usually fit and well, I exercise regularly and eat a healthy diet. No history of illness.
I have been suffering with RA like symptoms for the last 3 months. I have had scans and blood tests which show nothing significant, however I have all the hallmark symptoms of symmetrical joint stiffness in the morning that lasts longer than 45 mins, joint pain (knees, thumbs, wrists, elbows, big toes) joint redness, swelling in finger joints, fatigue etc.
Doctors have told me that there is nothing they can do because I don’t have positive blood markers so currently I’m hoping supplements will help until I can get further help.
I’m aware that seronegative RA exists but my GP does not wish to even contemplate it as he doesn’t have the typical blood markers or signs in front of him, despite pictures of my symptoms.
Any advice would be appreciated as I am getting so deflated by my lack of success in a diagnosis.
I have attached a pic of my knee redness (ignore the bruises, I fell over on ice)
Thanks
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BethRidout24
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Hi Beth, perhaps you might show a GP what NRAS (National Rheumatoid Arthritis Society) has to say regarding symptoms and seronegative RA.?
It sounds as if you need urgent referral to Rheumatology for specialist diagnosis even if not RA. There are hundreds of conditions that include symptoms of joint swelling and pain.
Thank you for your response. It is nice to know that others are supportive. I will try my best to discuss this when I get the chance to see my rheum. Doc
Are you in the UK? You say you have a rheumatologist.....has your GP referred you to the rheumy for his opinion.....if not I’d ask very firmly that be done ASAP.
Be persistent, be is RD or any thing else. Sometimes Drs have to think outside of the box so to speak, not every thing is a text book diagnosis. (That being said I do have a lovely Dr). I hope you get some answers so you can begin to understand what is going on in your body. Best Wishes.
Have you had an ESR blood level workout. This test shows, if there are raised inflammation levels in your body, which would give a high suggestion, that there is definitely something going on. Also, I would go back to that Dr and insist, he sends you for a referral. As, Pippy25 has already said, you need to be persistent. At the end of the day, you know your body, better than anyone else. Even if you have to get pushy, stick to your guns.
I have found that even tho' my Dr is supportive of my diagnosis, he openly admits, he has very little knowledge on the whole subject. And leaves most of the main decisions to my Rheumy Specialist.
I am seronegative too, all bloods normal except a low white cell count. I had to fight long and hard with my GP for a referral to rheumatology. I have a long story, but now have a diagnosis and receive biologic medication.
I found writing to the medics to be the best option, so perhaps an email , or a letter if you prefer stating your concerns will get things moving.
Many GPs know little, or nothing about rheumatology.
I have fortunately been referred, but it is hard to have continuous communication with them as the department is so busy. I had ANA, RF, Anti CCP, DNA and ENA rested which says -VE but other blood work was done around 2-3 months ago now.
I’m not sure if it’s related but my chest x-ray came back showing hyperinflated lungs.
I will definitely write a letter to them as I think that’s a good way of addressing things without going off topic in conversation.
I would insist that he refers you to a rheumatologist because the way you describe the symptoms you are experiencing suggest RA. I'm not saying it is but just waiting to see what happens as your GP seems to suggest could mean damage to your joints. Has he prescribed some anti inflammatories? Doctors seem to rely too much on blood results rather than how you are feeling. I hope you get a resolution.
It sounds a though you are well informed already about RA and proactive by the very fact that you have entered the forum and I have no doubt the NRAS website. I am relatively newly diagnosed. As a general rule I try to gain as much knowledge as possible as a layman, so that I go into any appointment informed. This gives me confidence and enables me to engage with the disease 'jargon', ask questions and to politely challenge when I feel I need to. You have recieved some excellent advice and I do so hope you get the referral you need. Kindest.
Hiya Beth. Sorry to have to welcome you but welcome anyhow! As you'll now know there is both seropositive & seronegative RD. By definition GP's are General Practitioners & whilst they usually will have learnt about Rheumatoid Arthritis whilst training it's very little in comparison. Once qualified they won't be presented with it often unlike OA which is more common so unless they have a Special Interest in it & taken the further qualifications or otherwise au fait with inflammatory diseases only a positive result may confirm referral is necessary. Then if they do the guidelines are to test for Rheumatoid Factor (RF) which may or may not be present, some people who don't present with symptoms can have low RF so you see it's not the best test. Did your GP test your inflammation levels (ESR or long term & CRP or current inflammation, both should be taken)? Another test, although usually only done once referred, is the anti-CCP, a more sensitive test.
Have a read through this, creakyjoints.org/symptoms/w..., print it off it you think it would help to explain to your GP.
Hi Beth so young to be dealing with this... I’m s- negative diagnosed 3 1/2 years ago. I now know I was having symptoms on and off 15 years ago . Was originally referred 8 years ago and told I didn’t have RD as my bloods were ok. Now I know that being s- negative doesn’t show up an RA factor. Knowing what I know now I would push to see a rheumatologist so you can confirm either way.Gps only have minimal knowledge on all subjects. Most on here have a on going battle to get treatment and understanding. Push your Gp . Any more questions don’t hesitate to ask I’ve Learnt so much from this forum... A great bunch 😁
Thank you so much for your message. When I next see the Rheumy consultant I will try my best to ask about a seronegative diagnosis as now I know that it’s not just a myth and other people do actually have it.
BethRidout24 I say PUSH with GP as hard as you can it took me 5 years and I so wish I had known what to do and how to push for certain tests. It did not show in my bloods till this year so don't give up and don't get deflated just come on here for a rant!
Thank you for everyone who has replied to my post. I didn’t expect that so many people would be so helpful. I have an appointment with. Rheumy In Feb and put on a cancellation list to potentially be seen sooner.
I have in fact been tested for the antibodies and RF and everything came back negative. So it’s a matter of discussing what to consider next. I will take into account everything people have suggested to talk about as I think it will help push for the right treatment.
The symptoms you describe I had as well when young tell me now when wiser that you may do something to stop negative processes in your immune system.
Joint pain and morning stiffness.
Can tell you about hormonal imbalance. Can tell you about estrogen being too high in relation to progesterone. Natural progesterone helps. And does no harm. Have the levels tested.
Subclinical hypothyroidism. Joint symptoms often linked to thyroid problems big part of RA pas have. ( often felt as cold hands and feet, not able to keep stable body temp)
Too little D3 you should.have it tested should be 150 mol. Takes some time and strong doses before you get it up. For me it was an enormous change.
Important supplements.
K2, vit E, B complex, 2000mg Vit C daily, magnesium, zinc, Vit A
A balanced diet, many are gluten free for a while to see if makes difference.
More important than you think: only use olive oil and coconut oil. Start your morning with cucumber and cellérier juice.Excersise daily ( not aggressively!!)
I did have a lot of blood tests done prior to RA tests. My TSH came back borderline underactive at 4.8, but due to living in the UK (having high lab averages) and because of my age, the GP did not think it was concerning. I have a history of thyroid issues in the female side of my family so it is something I won’t draw a line under yet.
I take the mini pill daily which is progesterone only as I can’t take the combined pill and I also take venlafaxine daily for an antidepressant which I have been on for two years.
My vitamin levels were tested which came back normal, however I have been using supplements to maintain good levels. These include, vit D, vit C, B12, iron, cod&liver oil, turmeric and glucosamine.
My diet is very well balanced. However I do struggle to cut out gluten as I did that once before a few years back and it made my tolerance to it decrease when I would have some.
On a side note, since having these symptoms I have noticed that my food allergies have spiked considerably. I can no longer eat tree nuts without coming out in hives which I once before never had an issue with.
Your THS is in fact way too low this in fact. Probably means that your T3 is too low to give optimal support to your thyroid. There is a very knowledgeable forum on thyroid problems on health lock It would really be a good idea to klick in to this. They really know what they are talking about. Another forum with a lot of specialist on how our metabolism works and how we can help ourselves to decrease inflammation and prevent illnesses from taking over is ray peat.com Good luck. There really is a lot préventive you can do.
I was originally seronegative when first diagnosed 32 years ago, but as I had severe inflammation in hands and knees my then GP referred me anyway, Especially when my ESR rose to 86. Now I'm seropositive! Wishing you all the best and hope you find a good treatment.
Hi Beth I’m a bit late answering you but better late than never. I was 38 when my first symptoms started. I’m 67 now . I’m seronegative too. I’ve had 3 periods of remission, the last one lasted 13 wonderful years with no meds. This is what has helped me - yoga, reflexology, lots of fruit and veg, fish and chicken. and good sleep if possible . This last year I was very bad and could barely walk ( I don’t drive so my feet are vital). In desperation the last 4 months I have been about 85% vegan, stopped gluten and drink herbal teas and I feel so much better. I’m just taking Sulphasalazine now, no painkillers. My consultant was encouraging me to try biological meds but I’m not keen as I often look after my 2 little grandsons who often get colds and of course the usual childhood health problems.
A friend with Rheumatoid Arthritis ( started when he was 19) swears by Tai chi.
This site is a fountain of great info and support. Keep going Beth. I wish you a much healthier future with lots of joy
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