Hi!
I was really hoping to get some advice. I went to my family doctor because my joints in my hands have been painful for a few months. She quickly said I could have RA and sent me for blood work on X-rays. She barely even glanced at my hands. RF and ANA were positive and she has referred me to a Rheumatologist (6-8 month wait). I don't really know what to think. I have little to no swelling, stiff and painful joints in the morning, and I've started to have other joints be painful like my wrists and feet (mostly ankles). My blood work showed not inflammation but I am anemic which explains why I'm so tired. Could I be RA maybe something else or am I worrying for nothing?
Anyone's RA ever looked similar to this?
Thanks!
Rose
Hi Rosie, sorry to hear your not well. I started with the same problems as you but in my feet. I had blood test, it didn't show much, only slight inflammation. X-ray didn't show anything, an MRI showed inflammation around my joints. I eventually saw a Rheaumatologist, who said he thought I had Serenegative RA. I have tried a few medications, which have helped, but side effects. I have been on Embril for 3 months, this has helped. Unfortunately I am now having the same in my hands, swelling, painful joints.
I was told that the medication helps and slows it down. I was walking with a stick and can manage without now. Maybe seeing the Specialist can help you. Sorry it is taking time for you to see someone, unfortunately it all takes time. If you find you are getting worse, maybe go back and tell your Dr. If you look on the Arthritis web site, they explain a lot about different types of Arthritis, one of the symptoms is fatigue, especially if you over do it. Hope this helps.
Hi rose I have sero negative RA and my symptoms started like yours. I suggest that 6-8 months wait for a rheumatologist is too long find someone else don't delay. The earlier you see someone the better as diagnosis may take some time. Treatment can take a while to work you need to get on the right treatment path asap! I wish you all the best of luck,
Hi Meg, you have probably read my reply to Rosie. Have you the same symptoms as me. Sorry, I don't mean to be nosey, but I haven't met anyone with the same RA as me. When I mention it to anyone, they haven't heard of It.
My hands were also sore but in the morning only. My RF is 240 however my hands show no symptoms of rheumatoid arthritis. I have recently been to a nutritionist who tested my blood and I was low in calcium and vitamin D. Since I've been taking vitamin D my hands have not hurt at all and this is been for two months now
Hi Linda sero negative arthritis is they say the same but without the elevated rheumatoid factor. The belief is that we may develop the rheumatoid factor during our disease, who knows. I try not to worry about my bloods now I just focus on how I feel. Your right about the fatigue that was the most debilitating part and pains in my ankle feet and knees, I have a great GP and rheumatologist and I am now on biologics which has been a iLife saviour for me. i am grateful as I am back at work and I have good family support but I have challenges with this horrid disease. Contact me any time I wish we could all meet face to face we are the only ones who know what we are going through! All the best with your journey!
Thanks linda!
It's hard to believe right now that it can get worse than it is.
I'm glad you found a drug that working for you.
I did read about fatigue being a big symptom. I'm finding a lot of symptoms that make sense for me. It's all kind of coming together but I've seen the photos of the massive swelling which I don't have. So it's nice to hear not everyone has that swelling or at least not in the beginning.
Hi Meg!
I'm glad I'm not alone.
I'm in Canada and it seems that's the average wait time unless you are urgent. I'm hoping to get on a cancelation list once I get my appointment.
I am worried about how long it's taking. It will be over a year since this has all started by the time a see a specialist I'm terrified of joint damage.
Thank you!
Hi Molly,
My RF is a low positive is what my doctor said the ANA is 1:80 all these numbers are another language to me. I have also started to take vitamin D but no noticeable change yet.
Thanks so much Meg, I feel pretty isolated, my family and friends are great, but have no idea how I feel. Don't like to moan all of the time. I have learnt to pace myself now. If I have housework to do, then I can't go out shopping and if I go shopping, then I can't do chores. I used to walk for miles, can only do a short walk now. I realise if you don't use it, you lose it. So everything in moderation. If I over do it, then I have to rest for a day. The main thing, is to come to terms with it all. Good and some black days. Having said all this, there are people a lot worse off than me, I keep telling myself this. My days of going shopping for the day with friends have gone, looking on the bright side, I have saved a lot of money, ha ha. You have to find a positive. My knees are also effected. Great sharing. 😊
I had a vitamin D deficiency Molly, I had meds. It helped, but the pain didn't go. That was a year ago. Worth a try though. It can cause a lot of problems.
It's a very hard disease to understand for others. Although my family are supportive they really don't get the relentlessness of it all, that is gets better but I stil can't do the things I used to. I agree that there are so many worse off and that I am lucky we live in an age of wonderful new treatments. We all need each other to vent when we need to. All the best!
It's great to compare Meg, you know your not alone. I'm sure we will share problems in the future. All the best to you to.
If you wake up one morning and can't move you will know you have RA. Wait for future signs. Blood tests should tell you. Good to have seen a rhuatoid arthritis dr already
Hi Rosie, everyone is different, when you read all information, you can relate to certain things. When I first started, I was given steroid injections once every 3 months. My feet were just painful to walk on. It changed after a year. If you get worse, please see your Dr. Im sure he could help. All the best for the future.
I am very sorry for your situation. Mine started on a similar fashion to yours. My hands and wrists started to ache alot about this time last year, I thought I was just doing too much gardening and digging. I had pain but little to no swelling. A few months later at a regular GPS appointment I mentioned it to him and by then other joints were affected as well. My GP ran some tests, and his suspicion was RA.
It took me 4 months to get an appointment with a Rheumatologist. I was diagnosed as seronegative RA. I was seen for the third time just yesterday and my meds have been changed or increased. Things still aren't great with me, still a lot of pain, a little less swelling. I hated having to wait the 4 months, but what small relief I got has been worth it. I was told yesterday that every person is different and responds differently to medicationsee.
I am sorry you have to wait, hopefully you will be able to check other providers or get on a cancellation list. Please don't feel alone, I know it's frustrating but please hang in there.
Lorraine
Hi Rose, it's tough when you don't have a definite diagnosis to come to terms with. I was first diagnosed with psoriatic arthritis about 4 years ago. I hadn't heard of it even though I'm a registered nurse and, I suppose, I was initially in a bit of denial as I don't really have psoriasis, only what I thought was a dry scalp. Anyway, that was then. I had severe pain first in one joint which would resolve only to reappear in another. It was bizarre but somewhere from way back in my nurse training I recalled 'flitting joint pain' and so my journey began. It seems a very long time to see a rheumatologist. Did you say you are in Canada? Are there no guidelines you can refer to? Here in England we have NICE guidelines. I tell you this as it may provide you with some timescales and other information you may find useful. Just google NICE Guidelines Rheumatoid Arthritis. I think it's clinical guideline 79.
​As I said 'my journey' (ugh!) started about 4 years ago. It's been a bit of a roller coaster as many others appear to be. The meds can be pretty effective in relieving your symptoms but are also pretty toxic with lots of side effects. It's been somewhat therapeutic sharing experience with others on this forum who actually understand. Best wishes, Carol
So true! My husband has been great. He's helped me get dressed, wedged a drink in my swollen and stiff hands, gone up and down stairs all night for ice packs and lots more but then says something a bit insensitive. So I agree they don't really get how chronic this horrible disease is. (My husband has been wonderful really!)
Hi Rose
i had been having niggling pains in wrists and hands for about two years. I was told I had carpel tunnel syndrome in both wrists. Then about SIX months ago I started to get worse and I had blood works which showed RF and ANA positive like you. Then in Nov last year I got a really bad cold followed by chest infection this went on for almost three months I was exhausted after 3 courses of antibiotics I found I was not recovering. The pains in my hands wrists shoulders knees got really bad. Blood work showed some inflammation but GP said it was nothing to worry about told me to go home and rest and not worry about it. A few days later I could not move I was in agony and called a private Consultant rheumatologist who saw me a few days later he checked my joints and told me all my symptoms were text book RA put me on steroids immediately. He carried out more tests and I got results yesterday inflammation in blood works really high and I will start on methotrexate next week. The consultant did explain to me that once we get these pains we have a very short period of time to hit the disease aggressively so please push your GP to send you urgently for an appointment. I was in agony but can move but my immunity has been compromised and I pick up colds and coughs very easily. I would tell anyone who has these pains to push for urgent appointment because consultant told me once pains start the joints start to get damaged and this can be even more painful and more difficult to control.
I hope you will be ok and get to see someone quickly. Good luck
You're right, Mandy. NICE guidelines say refer to Rheumatologist within 3 days of presentation and be seen within 3 weeks to avoid potential joint damage and deformity. I suspect that isn't available everywhere though.