Looking for answers: Hi. I'm a 30year old women. For... - NRAS

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AnnaV1 profile image
21 Replies

Hi. I'm a 30year old women. For the last 5-6years I will go through 1 to 3 days of mild to excruciating pain in my finger joints an knuckles (I have to.get my spouse to wash my hair it's so bad). It only.occurs every couple months. I mentioned it to my doctor and he told me that it can't be RA because RA doesn't affect some of the joints that are causing me pain...none the less he ordered blood work and he said all was clear and that was that. Thing is, I still get the pain and now in my knees and hips too. I'm concerned, auto immune disorders run in my family...and my GP does not seem to believe me.

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AnnaV1 profile image
AnnaV1
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21 Replies
Witness1 profile image
Witness1

Anna I seriously suggest you seek an alternative opinion even if you have to find the money to have one private consultation. Very often the private Consultant arranged to see you at his NHS clinic - but I didn't say that! We know how vital it is to get RA diagnosed and treated early - there's a 12 (or is it 16?) week golden window during which time treatment vastly affects the outcome. I say all this as someone whose GP messed around for a year and I had very acute onset. A lot of damage was done. I am not medically trained so can't possibly know whether or not you have RA but it sounds very much like how mine started - and I had 3 negative blood test results before the positive. I hear that's not uncommon but it doesn't necessarily mean one doesn't have RA. Please make a fuss and I hope you'll let us know how you get on. Finally don't despair, when the drugs work there definitely is a good life to be had with this disease. Mainly!!!

sylvi profile image
sylvi

Ask your dr for a refferral to a rheumy and tell him there is ra in your family. It sounds like ra to me as i had pain in my fingers and have that at the moment.xxxxxx

smithfield profile image
smithfield

I agree with syvli and witness. Ask for a referral to another rheumatologist as soon as possible. My RA started in my feet. left fingers and knuckles.

Where the bloods taken when you were in pain or without it, because that could make a difference to the results.

Please do something as soon as possible early treatment is crucial.

Iamrosey2 profile image
Iamrosey2 in reply to smithfield

I'm a newbie to RA...just diagnosed with Hashimoto and she said it sounds like I gave R A also.. which has gotten worse with levothyroxian...I haven't had an official RA test nor did she mention early treatment...guess I need to talk to her about that???

Amy_Lee profile image
Amy_Lee in reply to Iamrosey2

Dear lamrosey2,

I suggest you go to check that out. RA needs to be treated early to avoid and damage to the joint.

smithfield profile image
smithfield in reply to Iamrosey2

I think so .Good luck let us know how you get on.

Iamrosey2 profile image
Iamrosey2 in reply to Iamrosey2

Since this all brand new to me I'm trying to experiment with eliminating certain things from my diet...and need to loose weight..has anyone discovered that certain things actually make the pain worse?? particularly alcohol, coffee, soy or gluten??

Caza profile image
Caza

I agree with all the replies, I have sero-negative RD my bloods have always been near normal my rheumy treats my symptoms not blood results. Good luck

Kate23 profile image
Kate23

My RA started in my right hand with swollen and excruciatingly painful knuckles, could hardly bend them...my GP nurse was the one who flagged it up as possible RA, consequently I had bloods done and they came back sero-negative, but I had an appt with a consultant and had an Mri scan which showed it was in my feet as well...that was 2 years ago..I think you need to insist on a second opinion, GPs have limited experience and you really do have to shout loudly to be heard. Good luck.

AnnaV1 profile image
AnnaV1 in reply to Kate23

What were some of the other symptoms you were experiencing?..if you feel comfortable sharing

Kate23 profile image
Kate23 in reply to AnnaV1

I felt really drained, everything took such a lot out of me. Think that was what worried me most, going from someone who could walk miles with the dogs and then still rush around at home to someone who had to think twice about climbing a flight of stairs to go to the loo!.. .. Also random nerve pains down my arms like sciatica type pain, lack of concentration as well, but that might have been because I was so worried.

Very frusterating that you have to keep going back to the doctor and leave feeling defeated...Please go get a second opinion and take pictures of anything that does not look normal.

RA is a tricky, sneaky disease. On some people (like me) the symptoms come and go for a few years before it sets in.

You may not have this disease, but there is something definitely not right with your symptoms.

I know how hard it is to stand up for yourself when you are scared and in pain. Please do not allow any doctor's dismissive attitude stop you from getting the help you need.

Take care

Sue

Kariss profile image
Kariss

As all the others have commented, please don't wait - ask for further tests and don't be fobbed off. I ignored my early symptoms and didn't get help quick enough and now I have an ugly deformed finger which is fixed in place with virtually no movement. My blood tests also showed seronegative but my doctor was very thorough and made sure I got further tests.

Good luck, please let us know how you get on.

npkb profile image
npkb

Definitely - as all have said, get a second opinion!

Warning - rant coming up . .

My 25yr old niece has had pain and inflammation in her finger joints on and off since January- at the time put down to a reaction following a weird fungal infection she'd had. As it hasn't cleared, she returned to the surgery.

Conversation with gp:

"Why are you worried, what do you think it could be? "

"Well, my aunt has rheumatoid arthritis"

"No, dear, I think you probably mean osteoarthritis, rheumatoid is quite different and leads to joint deformities"

"Yes, I do know that, my aunt has had RA 40 years and is badly affected in every joint in her body"

He looks at her fingers.

"Well, I don't think it looks like anything important, do you? It's probably Reynolds syndrome. Keep your hands warm." (She works outdoors with horses in all weathers)

My niece is gobsmacked and leaves.

Most GPS are good, some are excellent . . . . And some would do more good stacking shelves at Tesco!!

JDQuinn75 profile image
JDQuinn75

It could never OA that you have AnnaV1. I also have joint pain in my hands like you, but also in my knees, feet and hips as well. Like you said it's very painful. I also have pain in my lower back. I'm in my 40s now. Mine started on me when I was in my late thirties. Mine has gotten aggressive so if you can find something to help you ease your pain use it. If yours is Osteoarthritis it can be very painful in every join the that's effected. Especially in the hands and feet as well. Good luck. J. D. Quinn

EmmaS-NRAS profile image
EmmaS-NRASNRAS

Dear AnnaV1,

So sorry to hear that you are having difficulties with your GP and that he is suggesting it can't be RA due to the joints it is affecting. RA can affect any joint in the body with the exception of parts of the spine (although referred pain is possible if other painful joints affect your posture/walking etc). Please do ask your GP to refer you to a rheumatologist as there are so many forms of inflammatory arthritis and only a rheumatologist (or GP with a specialist interest in the disease - GPwSI) can make a diagnosis. There is also no one test that can diagnose RA. Do have a look at our online pathway which will hopefully help you when you speak to him - nras.org.uk/2-first-visit-t... If he still refuses to refer you, please do see if you can see an an alternative GP.

If you want to talk it through with anyone, do give our Helpline team a call on 0800 298 7650 and they will be happy to help with any queries you have.

Do let us know how you get on.

Kind regards

NRAS-Emma

Hobbits profile image
Hobbits

I agree with everyone above. Go back and ask for a referral. If you don't get it, go to another doctor.

My RA started in a finger and I was misdiagnosed. Every new joint that was affected was misdiagnosed as an injury. An injury I even told me Doctor is not possible. After over three years of suffering I told me Doctor O think I have RA. He looked at me amused and asked why I thought that. I told him I am having issues with....(and listed all the joints affected) I told him that my father has RA. My doctor laughed and told me RA does not run in families. I suffered so long and almost lost my job. I went back to doctor mad, this time he said. " I think you might have RA" and sent me to a Rheumy. My Rheumy was astonished it had taken over three years to get me there. Unfortunately I already develop bone or erosion in one hand and both feet.

Seriously, you have to stand up for yourself and it's not easy with some doctors who make you feel like they know everything

Amy_Lee profile image
Amy_Lee

I agree with all the above suggestion. Do go for second opinion!

Jelco5 profile image
Jelco5

It sounds like what happened to me. To bad you can't come to Canada. And see a RA dr. No need to find money to see him. There GP should not be saying yes or no to RA . You can request to see the RA dr. He will take a look at you and tell you. I went through that and it took acouple of years for GP doctors to find nothing. Went to a RA dr . Boom I have RA. I am on meds and 98% better. I wish you luck

popsmith1874 profile image
popsmith1874

Hi I echo all the others on site, I'm zero negative and bloods don't show but be RA OA IBS and angina and I've family history I'm on 20mgs metro jet 50 Mgs Benepali biosomar injection and have just been medically retired from work so I would ask for referal to Rheumy or a second opinion take care xxx

traciedeitz profile image
traciedeitz

Dear AnnaV1 My RA started in my fingers when I was 17. I also had to have other people do such things for me. I had to have replacements in my fingers before I get could get past that problem. I am 45 now and my RA has continued to worsen since then. But, I was also told I had fibromyalgia which was quite a problem also.Good luck with your pain and finding out what the issue might be.

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