Hello, I'm Melissa, 31 years old. Last December, I started experiencing stiffness in my fingers upon waking up. I couldn't make a fist for a few minutes but gets better as the day goes. This happens everyday since. So I went to my family doctor and he ordered some blood tests. It all came out normal since he didn't call me anymore after that. Two weeks ago, I went back again and he said it might just all be "in my head" but he still ordered an x-ray for my hands and referred me to a rheumatologist whom I will be seeing this week. I am just wondering if everything in my blood tests are normal (but that was done months ago) how come it's still the same after 5 months? I work in a care home, could it only be overusage? But then how come I am the only one experiencing it? When all of us do the same thing at work
It's hard to share this to other people who can't relate, so I'm happy there are forums like this where I can share my experiences.
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mel2205
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Hi Mel, and welcome to the site. Sounds like you had a poor experience with your GP but the upside is, he has referred you to rheumatology.
My journey started with pain in my lower back- it was horrendous and relentless. I’d be stiff as a board in the morning and it would rarely get much better, day or night. This went on for months and it wasn’t until my hands started swelling and causing me pain that blood tests were taken and I was referred urgently to rheumatology.
The referral process was unfortunately slow but when I got there, I was diagnosed with Ankylosing Spondylitis and Rhuematoid Arthritis.
From there on in, a treatment plan was agreed in quickly.
Blood tests don't always show RA so you could have RA and the bloods won't show it. I have had this problem on and off for years and most of the time my bloods show normal. xxxxxx
Hello, An x ray wouldn’t show anything at an early stage, an ultrasound would probably be more appropriate. How long does the stiffness last? Everyone is different I suppose but I noticed pain in my joints get worse almost everyday in ankles, knees, fingers, wrists, elbows and neck. If you’re really worried you could pay privately to see a rheumatologist, this could cost a couple of hundred pounds although it could give you peace of mind?
Hey Melissa. I usually don't post on here but I thought I'd offer you my personal experience having read about your concerns. For whatever it's worth, anyway. I started having stiffness in my fingers last May after doing some carpet replacement in a rental home we had just purchased. To be sure, the work was taxing on my hands and my immediate concern was that I'd maybe strained the ligaments or just aggravated the joints through overuse. My wife, who is an RN and a nursing professor here in Portland, Oregon, also seemed to think that was a reasonable diagnosis and told me to take NSAIDs and let them calm down. A week later and nothing had changed, but having been quite healthy for 50 years I wrote it off to the likelihood of some low-level osteoarthritis which seemed logical. Another week and no change. Like you mentioned, I wasn't in pain; they were stiff in the morning and got a bit better throughout the day, especially with light use, but it never totally went away.
So, I started doing what my wife hates when I do it: I got on to WebMD and some other sites and started self-diagnosing. A dangerous rabbit hole to be sure, but also a useful tool at times. One thing kept coming up again and again, although I had little to no knowledge of it and felt initially puzzled: RA. I don't smoke, I'm not overweight, have no known history of such thing in my family and felt relatively sure that this could not possibly be what was happening. To be sure, I booked an appointment with my GP who sort of laughed and said, "You don't have rheumatoid arthritis. Nothing fits the profile. But, if you'd like we can take some blood and you'll feel better when the results come back." When the first results came back, the nurse called and told me my inflammatory index was normal. I could relax. I went off to a conference in Alabama and waited for things to return to normal. I got a second call while there, and this time the nurse had different information: your numbers are high for the other two tests and the doctor wants you to consult with a rheumatologist when you get back. That's when everything got real.
I was scared when I went in, but I think more than anything I wanted clarity, even if it meant knowing that this was the scenario I dreaded. He didn't beat around the bush. He said he strongly felt that it was RA and in the early onset stage. He also said that this was the ideal time to be diagnosed since no damage had taken place and that I was healthy in all other ways. He also suggested I start on methotrexate right away, the drug I had been reading about for the past month that frankly scared the hell out of me. I asked if maybe trying dietary alteration, naturopathic remedies or some other less intense response was a possibility and he very gently told me that, in his 40+ years of rheumatology, this was the gold standard and nothing else could he recommend if I were to have the best opportunity to arrest the RA before it reached the next stages. Other things like diet were helpful and healthy corollary treatments, but they were not a proven substitute. He told me to think about it, but not too long as time was an important consideration moving forward. I went home stunned and I did something I don't do very often: I cried. I cried out of frustration, and anger, and fear, and God knows what else, but when I finally stopped, I decided that denial was the enemy here and this was going to be a day-by-day act of acceptance. I called later that week and asked for the prescription to be filled at my local pharmacy.
It's been about a year. It initially took about 12 weeks for the medicine to fully take effect, and I've had to work through some flares, which I'm slowly learning how to anticipate, manage and, for the last few months, avoid. I eat smarter. I exercise more. I pay attention to sleeping enough. I still drink beer, but less. I take the methotrexate once a week and the side effects are relatively minimal; I'm sometimes a bit groggy on Saturday morning but I fight through it and by late afternoon I come out the other side. Sometimes I'm still angry that this "happened" to me--why me, after all?--and I let myself feel that, but not for long. Stress is my worst enemy and the surest way to incite a flare, so I try to let it go. I laugh a lot, at myself as much as anything. I pay attention to things that eluded me before. Some days I even feel pretty lucky and I'm optimistic that taking care of myself and hopefully some advances in medicine will give me the opportunity to keep being the best version of myself for a long time to come. Even with the bad days that I'm sure will be there as well.
But the point of my long-winded diatribe is that I think I understand how you're feeling right now. Anxious, a bit scared, confused, inside your head a lot, and hopeful that whatever is happening will pass in some benign way. And it may, and I truly hope that it does. But don't wait. Please don't wait. The stories I've heard about people who wait, whether through misdiagnosis or denial or whatever the case may be, and then suffer because of it are disheartening because I can only think it didn't have to be that way. Early diagnosis is the key to avoiding the worst this disease--or any disease--can wreak upon us. A thorough diagnosis from a trustworthy rheumatologist is the best thing you can do at this point, no matter the outcome. I'm sorry to have deluged you in prose--I'm an English teacher and a bit of a hack writer and the COVID-19 deal has given me ample time to sit at the keys--but I wanted to reach out (across the Atlantic I presume) and tell you you're not alone, even if it feels that way right now. I wish you the best of luck, an RA-free diagnosis, and the courage to stand up to whatever life seems to be throwing at you at the moment. Hang tough, as we like to say in this part of the country.
That's a wonderful post, it was very good of you and worth it for anyone who is starting out on this journey who is afraid to pay attention to. This forum is lucky in that it has so many good people posting here.
You are right pathos....Acceptance , Patience & Perseverance ...the keys to a successful journey through R.A.
If your seron- negative you bloods don’t always show inflammation. My doesn’t. Like you I went to my gp ( for many years) with symptoms and was told I was depressed or they just shook their shoulders. A rheumatologist is the only one who can diagnose you . There will be a physical exam often squeezing your joints to see if there is swelling and tenderness. They will also scan your joints as well as blood tests.can I suggest you keep a diary eg how long stiffness lasts etc and if you have redness and swelling note these as well as taking photos all this will help with a diagnosis. Good luck
Mine started with my hands and feet.RA was never mentioned at the start but my wrists were agony and ended up getting my wrist fused.That eased that for a long time but i was still having problems with my feet and my doctor said it could be RA when it hit me like a train and i could not move but it did show in my bloods but i know there are lots of people where that is not the case.My RA factor was 280 that was over 20 years ago and my hands and feet are still a problem but my GP at the time was great trying to push to get me seen hope you can get some answers soon
Hi Mel, I did start with those symptoms and did nothing about them assuming it was some kind of tendonitis or RSI in hands or wrists, mone lasted around 5 months occasionally waking me early morning with extreme pains and needles effect and varying pain.
Then I developed a really nasty chest infection, other than well managed type 2 diabetes (6 years at that point) i was extremely fit and hadn't had a day off work in 34 years, but the chest infection had me crawling up the stairs 24 hours after onset.
Next thing BOOM! i suddenly had agonising pain in my hands and wrists that i couldn't ignore.
Went to gp and he immediately ordered trays and blood tests, gave me steroids and made an appointment with RA nurse.
His hunch was right and xrays showed signs of inflammation and tested positive and very high ESR.
I got steroid jabs which helped some and straight into MTX.
When I spoke to my gp before he stated he had always had an interest in RA and said that many times he had seen a chest infection in particular fire up the immune system to the extent that it almost seem to induce sudden onset and severe RA in very fit people.
I have spoken since to my RA consultant and he agrees that without warning he has seen this happen.
I hope you are not about to join our club, with the best feelings in the world none of us would want to see your here.
But if you do you will find the understanding and kindness of the caring souls here a real help.
Hello and welcome. I'm sorry your are so confused anxious. The diagnosis process is normally a long and confusing time. I'm 25 and was diagnosed with seronegative RA at the age of 20 which was later changed to psoriatic arthritis. My blood tests were also negative and so are many others. I have to agree that an ultrasound scan is more likely to show changes compared to an xray. However a good rheumatologist will know that and is likely to send you for a scan. I've been on mtx since the beginning and it's a terrific drug. Has given me my life back and I couldn't cope without it. Overall there is plenty of choice out there and if you receive a diagnosis then you'll find a drug suits you. Please keep us updated on your progress and hopefully you'll find answers soon x
Hi Mel... diagnosed @ 72 after collapse/ stress events but have just remembered [!!] that for years b4 that, in the 80s - 90s my hands used to freeze on the steering wheel. Just sayin', tho' don't know if that was an early sign. Wishing ou well xox
Hi there - you have my sympathy with the unhelpful GP!
I started getting pain in my big toes - I just thought it was from being on my feet all day at work. Then it started in my knees - they suddenly got really hot, inflamed and agonising, but that went away again. Then it started in my hands - at which point I went to the GP. He crunched my thumbs, ordered an xray and said it was osteoarthritis, deal with it.
So I dealt with it for a long time, then it got worse so I went back, but chose another GP - they were much more helpful and referred me. I only wish I had pushed the first GP sooner, but I didn't want to 'make a fuss'. One thing having chronic illness has since taught me is that you NEED to make a fuss, as early as possible!
I have seronegative arthritis too, and as people have said, the blood tests may not show it - you need a proper examination by a rheumatologist. J1707 has a very good suggestion about keeping a diary of sorts with your pain/symptoms - this really helped me with my appointments. I'd also suggest you write down any questions you may have beforehand, and write down answers you get in your appointment. Very best of luck with your consultation - I hope you get some answers and some relief! xx
My RA started in stiff toes and fingers which didn’t become red or swollen for a long time. About nine months. As was said here from Sylvi and others, it doesn’t always show in the blood for some time and sometimes not at all. My stiffness in the morning lasted from waking for several hours. Took until about 4pm to come round. I had gone on a walking holiday to Italy and found my feet were sore but thought it was a lot of hills and walking boots for the toes, but when the fingers started I wasn’t sure. I was doing a lot of typing at the time so couldn’t be sure. I was also referred from to an very senior respected orthopaedic surgeon in Leeds who has seen so many people prior to diagnosis and he said he suspected it but my mobility and range of joint movements were very good. It was a confusing time indeed for a year.
I had an isotope bone scan about of all my body to see if there were “R.A. hotspots” as my consultant called them, and there were definite areas in my toes and fingers. Then not long after that my ESR rocketed and visible signs of R.A. They were unable to prescribe meds until a diagnosis of RA confirmed they said, and this was in late 1995.
I hope you don’t have it but if you do and you’re diagnosed early it will be stopped sooner in it’s tracks and controlled. I hope you can soon feel better as working with arthritis and joint issues is not easy for anyone, when it’s flaring or starting up. Good luck Mel. x
Mel, it sounds like your GP knows very little about RA etc. There are many people for whom it doesn't show up in the blood. Mine started in my fingers and I also had very heavy arms and shoulders, almost like they were too heavy to lift up and I didn't know where to put them at night. Over time it has also shown up in my toes, knees, spine, jaws, elbows and shoulders. I actually think that signs of it were there when I was a child as my hand used to ache badly from the age of 10 and my jaw became painful and stiff and crunched at the age of 14.
It is a cruel disease and can take a long time for anyone to find the right treatment. In fact I don't feel it has been found for me yet. It is good that you are going to see a rheumatologist as they will know about the illness and be able to sort out the best treatment for you.
Hi. I had very similar experience to you , but 40 years ago. Keep at them fir regular reviews. Even when mine really flared up after months of stiffness there was no help from GP. Blood tests weren’t as sophisticated then. Eventually after 6 more months I got referred to a lovely consultant who said I was a classic case & coukdn understand why the GP hadn’t spotted it sooner. Hope you get some support.
Given the internet, it is now likely that the an inquisitive patient's knowledge of their disease will exceed that of the GP. GPs are most useful in giving you the most likely cause for symptoms that many illnesses share. Really if you have a good idea of what your diagnosis is you need to go to a GP armed with facts demanding a referral.
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