Wondering if this is worth going back to ... - Arthritis Action

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Wondering if this is worth going back to my GP for

BonnieLass13 profile image
19 Replies

Hello everyone, I'm Zo

I'm 27 and last year I was not diagnosed per say, but my GP 'suspected' or said it 'may be' early osteoarthritis as tests for rheumatoid arthritis came back negative (my mother has it). I've had joint pain since I was 18, started in my left knee and has since progressed to my back, hips, shoulders, wrists, hands, neck and sometimes my ankles. After getting fobbed off as just being 'fat' or 'too young' (yes this was said by an old GP I had), I went to a new one (still current) years later, who hasn't fobbed me off for anything which I really appreciate. I'm plus size so I am aware some extra weight may give me pain, but I am active, and I have weighed less and weighed more over the years but the pain persists.

Currently I'm having pains in my hips and back, mostly when I sit, bend down or even just shift slightly while I'm standing. My hip locks up sometimes when I stand too. I'm contemplating on whether I go back to my GP about this as the pain has been on and off, flaring up when it rains then settling down slightly to a mild ache when it's warmer. It also hasn't been made better by me tripping on my laptop cable and falling in my bedroom on my left side on Christmas Day. I want to exercise but I always worry about aggravating whatever is wrong with my back. I'm also getting sciatica type symptoms down my left leg, not so much numbness or tingling, but more of an ache.

I'm dreading winter this year because my entire body flares up.

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BonnieLass13
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19 Replies
Happyrosie profile image
Happyrosie

there’s a disease called Ankylosing Spondylitis which attacks people in late teens or early twenties, and mostly affects men rather than women. The average delay in diagnosis is about ten years as it’s difficult to diagnose and your gp may rarely come across it in young women like you.

If you Google NASS you should come across the British website of the charity most concerned with this. When you’ve absorbed the website you might get back to your doc.

I’m not saying you have AS but it’s a definite thought. My husband contracted it in his late teens so I know a lot about it!

You must exercise at least by stretching otherwise your muscles won’t be able to support your joints.

Please do contact me if you need further help.

BonnieLass13 profile image
BonnieLass13 in reply toHappyrosie

Thank you, I will go and check up on that website and give it a thorough read through.

Toods profile image
Toods in reply toHappyrosie

Hi happyrosie, just wanted to point out that ankylosing spondylitis/ axial spondyloarthritis actually affects as many women as men and the idea that it’s mainly a man’s disease has been overturned. Sadly, because the general thought is that it mainly affects men, women get overlooked and usually have to wait much longer for a confirmed diagnosis. Currently NASS are doing studies into this to reduce the waiting time from 8.5 years to 1.

Happyrosie profile image
Happyrosie in reply toToods

I stand corrected on the male to female ratio, Toods.

medway-lady profile image
medway-lady

Look up the NRAS website because you can test positive and still have RA. I'd get more information and go back to GP as yes it could be OA but there are a lot of medications used to treat RA and you need to get a referral to a Consultant to access them. Information is key and as you have RA in the family you do need to get help.

BonnieLass13 profile image
BonnieLass13 in reply tomedway-lady

I had blood tests to check for inflammation markers but they all came back fine. I don't have the typical RA symptoms, at least not like the ones my mum has. But I do think it would be better if I was referred to a rheumatologist as they're more experienced in that area.

medway-lady profile image
medway-lady in reply toBonnieLass13

RA is different for everyone so don't leave it and ask to be referred as at your age its best to be sure and if it is then treatment could avoid long term damage. Speak to your GP and see if he will refer you. Best of luck.

Amkoffee profile image
Amkoffee in reply toBonnieLass13

My rheumatologist said that there is about a 25% false negative rate with the RNA test used to test for inflammatory arthritis. That being said there are so many conditions that can cause the pains you are experiencing. I do hate it when doctors Gaslight us especially because of age or sex. Trust me when I tell you that you would be listened to and believed if you were a 40 yo white male.

BonnieLass13 profile image
BonnieLass13 in reply toAmkoffee

Tell me about it, I actually can't believe I got a GP that listens to me for once. I will still have to keep badgering him though about doing more tests. Something definitely isn't right with my lower back. Not sure what I was doing but yesterday I was just pressing along where my lumbar spine is and it wasn't a lot of pressure, but it hurt, so that will be addressed when I see him next

piglette profile image
piglette

You could look at the Versus Arthritis website too. versusarthritis.org/ You can ask them questions.

Hectorsmum2 profile image
Hectorsmum2

Have you had your vitamin D checked as low levels can cause lots of aches and pains, might make an existing condition feel much worse. It might also be worth getting thyroid bloods done and posting on Thyroid uk forum for advice. Thyroid conditions also cause aches and pains and often go undiagnosed.

BonnieLass13 profile image
BonnieLass13 in reply toHectorsmum2

I initially went to my GP last year (which was the first appointment I ever had with him) because I was unwell, fatigued, dizzy, my legs were restless etc. Got blood tests and it came back that I had low iron, not anaemia it was just low and I also had low vitamin D. I've been on supplements for months now and haven't had any issues since. My previous visits with my old GP all my blood tests came back normal for iron, vitamin D etc. My thyroid has also been checked for each blood test I've had and it's always been the same which was nothing alarming of abnormal detected.

Hectorsmum2 profile image
Hectorsmum2 in reply toBonnieLass13

Bonnie it is still worth posting your blood results on thyroid uk. There are some experts re vitamins and minerals and a lot of people being told bloods are normal for thyroid when they could benefit from treatment. You have a legal right to blood results, my GP surgery email them to me when I ask. also with restless legs and dizzyness it is worth thinking about low B12. Sometime doctors will ignore a low B12 results and sometimes the result says normal but you still need some B12. There is a pernicious anaemia health unlocked forum that you can look at or post for advice on.

BonnieLass13 profile image
BonnieLass13 in reply toHectorsmum2

Thanks, I will try and ask for my blood test results. I did have my B12 checked but it came back fine, I have been taking B12 for about two years prior anyway as my dad had the same issue and then my mum noticed I was having similar symptoms to him and said I should just take supplements

willat profile image
willat

sounds very similar to my issues with psoriasis arthritis 30% of people with skin psoriasis develop the condition.

The age thing could make anklosing spondylitis more likely or there is a juvenile arthritis to look into.

Good luck but keep badgering professionals

BonnieLass13 profile image
BonnieLass13 in reply towillat

Thank you, I will keep asking him to investigate further as while ìt may be early OA I'd like an official diagnosis in case it's something else entirely

I would also ask for your magnesium to be checked.

Frankie24 profile image
Frankie24

You need to see a rheumatologist to help you figure out what is going on. Arthritis can strike anywhere. I have it in my jaw, shoulder, both knees, my right hip and cervical and lumbar spine. It can be quite painful and disabling at times ! If you need a referral from you GP get one ! Don’t keep suffering in silence.

Batty1 profile image
Batty1

RA tests are not always reliable in detecting rheumatoid and then their is psoriatic arthritis which is difficult to get diagnosed because it has no blood test its diagnosed with a detailed medical history/family history of pain and psoriasis .

I have PSA and it attacks my knees, feet, calves, hips …. Now it’s attacking my arms and hands I can’t apply grip strength to open anything… don’t give up find a rheumatologist that listens and trys to solve your issues.

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