I'm sorry for such a long post, but if you have the time I'd be so appreciative if you could read it and answer any of my questions you know something about. I'm brand spanking new here and felt this would be a great community to turn to with obviously a wealth of experience, info, and knowledge. My heart breaks reading some of your posts, as so many of you battle this disease at a much more advanced stage, and have been for many years. I really have nothing to complain about in comparison.
My situation is this: I am a 47-year-old female and I am currently going through the process of being tested for RA. If I do have it, it is obviously in its VERY early stages. For years I have been experiencing mild RA-type symptoms; joint pain and stiffness in the morning, occasional lack of range of motion of certain joints, severe knee pain that only occurs when I jog or run (therefore have not jogged in many years), and inexplicable pain here and there in my body in various places. But certainly nothing debilitating. And nothing that can be physically SEEN. No visible swelling or redness. So I tossed it up to just getting older and hitting middle age (lol).
One symptom I have that is SEVERE and has been for many years is extreme inexplicable fatigue and low energy and stamina, which has resulted in the need to lie down and rest a lot on an almost daily basis. But I never knew that had anything to do with RA.
A few years ago I was diagnosed with another autoimmune condition: Psoriasis. I've had some bad flare-ups of this in the last few years. But again, I count my blessings since they do quiet down, and range from mild-moderate. It was only after this when I started doing research I discovered that if you have one autoimmune condition that it puts you at a much higher risk of others and that there is a genetic factor. I started to put two and two together. My grandmother had very bad RA, and suffered for many, many years with it. It actually eventually shortened her life.
She was diagnosed officially in her 50s, but she always said that her symptoms started years earlier in her 40s, and that one of the first ones was extreme fatigue - even BEFORE she had bad joint pain! I felt so bad, because apparently she would have to go to bed as soon as she came home from work, and my grandfather was not very understanding of it.
All to say between my extreme fatigue, the genetic component in my family, and the mysterious RA-type symptoms (albeit mild), my doctor sent me for blood tests. Turns out I have a RF of 20. My C Reactive Protein was borderline normal, but still normal. I am anemic (which I read can be associated with RA) and have an extreme Vitamin D deficiency.
So my questions to you folks are:
1) Is there such a thing as "Pre-Rheumatoid Arthritis"? And if so, what would those symptoms be? I'm no rheumatologist, but in my mind my symptoms aren't quite severe enough to be diagnosed as Stage 1 yet. Did any of you experience mild pain and stiffness without visible swelling or redness when you were diagnosed? Or, in order to have RA, does the joint swelling and/or redness need to be externally VISIBLE?
2) Did any of you experience extreme, debilitating fatigue for years as one of your very first symptoms, just like my grandma did? Fatigue that was so bad, that the mild joint stiffness and pain was nothing in comparison? To me, this has been more debilitating than ANYTHING else, and has taken a huge toll on my relationships, my ability to participate in hobbies and activities, and my social life. My boyfriend is also at his wit's end.
3) Is a RF of 20 considered testing positive for the factor? I keep reading different things from different labs so I'm very confused. In any case, my doctor wants to see me about it to discuss the result. I don't think it's high compared to what it could be (or what I've read that some other poor people have), but combined with my other symptoms and the genetic factor, is a 20 cause for concern?
4) In recent months, I've had many different types of skin infections, rashes and inflammation: viral, bacterial, and some strange mystery sores and hives. Is this kind of thing related directly or indirectly to RA? Also in general, since I was a kid, I've always had a pathetic immune system, and have gotten sick with everything and anything. Use up every sick day I have at work every year.
Anyway, I know these are a lot of questions, and I really appreciate any of you who have taken the time to read this! If you can answer any of my questions, I would be so incredibly grateful!! Thank-you so much in advance!
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EagleRising
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Welcome to this forum where you will find a kind, knowledgeable, caring and funny community. I was diagnosed 2 years now, feels like yesterday. Herewith my takes based on my experiences as everyone is different with RA.
1. I was a very healthy active person. However, I was getting roaming pain which I thought odd. Then one day I awoke could not move my arm. RA swiftly spread to my feet. I have never really had swollen red areas. Just tender joints. Today it has elevated to joint stiffness in hands and feet. This all started in one foot.
2. Never felt fatigued. I do now, I feel due to medication as well as active RA.
3. I went private and had a CCP which validated I had RA. No matter what the figure it was a done deal.
4. Had one minor rash, which disappeared with olive oil and vitamin e. I found I was getting cold sores, upped my lysine intake.
I would say, don't stress, take each day as it comes and I guess don't be complacent. Because I had minor symptoms I felt ok, but it had spread as the meds are not working as well for me.
Hope I have answered some questions from my experience with RA that prove useful to you. You will get more of the community who can jump in with there take too.
Reading your story it all sounds so familiar. Not sure if I would describe it as early onset but that you are actually living with the disease. Which sort of arthritis I am not qualified to judge. Have you rang the NRAS helpline? They are wonderful, please give it a go if you haven’t already done so. Completely understand all of what you reported, even the skin reactions.
My advice would be to get a Rheumatology Consultants opinion on your situation. Either private or NHS you need guidance. Privately your GP maybe able to help suggest or you may need to research online.
Don’t loose hope. There are many drugs that really can really help. Keep that in mind.
I am now 53, diagnosed at 47 with husband children job and home to run, I came to a full stop with most of your symptoms and then everything swelled up and I literally couldn’t move.. I had been suffering many symptoms on and off for years
Methotrexate gave me 6 years of my life back. Now I can’t take it as my liver has protested. I am waiting for the next move.
Hiya EagleRising, welcome. Well, everything to my mind is pointing to RD (RA but because some of us choose not to have the generally misunderstood Arthritis label we prefer Rheumatoid Disease) or even PsA, Psoriatic Arthritis. As you've asked your questions numerically I'll attempt the same!
1) Well, yes, we all had pre-arthritis symptoms to be diagnosed. Not trying to clever but we all started somewhere & to be honest yours sound more advanced than your bloods results suggest. A Rheumy will never rely on bloods alone when diagnosing. He'll examine & request images are taken of at least your hands & feet, usually X-rays initially but if they're not conclusive he may want to use ultrasound which is excellent at picking up otherwise elusive inflammation. This is because, as you are saying, not everyone presents the same, or has visible swelling or even redness, although most do. This is why it's sometimes tricky to diagnose.
2) I didn't have the fatigue when diagnosed, I was just very tired (I now know the difference!) but it's a typical symptom of RD. I should say I was diagnosed very early, only a month after initial symptoms, very painful feet, but I was very fortunate in that my GP was a GP SPIR (GP with a Special Interest in Rheumatology, she'd taken a further diploma) so knew the early signs & took RF anti-CCP, ESR & CRP, I was diagnosed seropositive a fortnight later. I should also say that I wasn't living in the UK at the time so I was very fortunate to be under a different national health system with different guidelines. Unfortunately if you are referred to an NHS Rheumy it could take some while, the NICE guidelines are I think still within 12 weeks. You do have fatigue by the description you give, this will be taken into consideration by a Rheumy when diagnosing. Vitamin D can also impact on your fatigue, as can anaemia, your GP can prescribe something to help with those.
3) You can have RF without having RD, unless it's a very high result it's not a reliable test but it's cheap so GP's still use it. Neither is it a good test on it's own, this is why inflammation levels are taken as well. No, an RF of 20 isn't particularly high, mine was over a thousand, but it's only one part of the jigsaw puzzle. If referred a Rheumy will order a blood test called anti-CCP, a more reliable test, your GP may order it but it's less likely.
4) Your skin problems are why I mentioned PsA. You may want to check from others here with PsA (use the Search box for past threads, to filter results select NRAS or Your communities for NRAS past threads) but I think I'm right in saying that those with PsA do tend to have lower RF & more pain when the joints are palpated.
My Nan also had RD, my Consultant considered my RD genetic, but I would guess like mine the meds available then to your Grandmother were few & basic compared to what our Rheumys have available to them today. RD didn't make so much difference to her longevity, though she was definitely badly affected joint-wise she was 80 odd when she died but the prognosis today is very different to your Grandmother's thankfully. It does have a tendency to affect our vital organs, it is systemic, this is one reason it's important to diagnose as early as possible, so we can start treatment in order to delay heart, lungs etc being affected. I was 48 when I was diagnosed (58 now) so not much different to you, it is a common age, or thereabouts, to be diagnosed I've found from being here. It is thought by some to be hormone related, as for some we're diagnosed around the time we're at the start of going through the menopause so it makes some sense but of course not all. Whilst fewer men are diagnosed they certainly don't go through the menopause! Do keep your boyfriend involved though, it's not easy from the partner's perspective, they need to understand how it effects you day to day, even when on meds that are helping it can still be difficult to appreciate how it is when he's not the one that is experiencing it. I would also recommend if possible he attends your diagnostic appointment, if it comes that, it will not only be moral support for you but helpful for him to understand, even appreciate not only the how the disease affects you but also how fatigue can floor you. NRAS do a range of leaflets & downloads, one of which is on RD & relationships, just so you know they're there for you if you should need them.
I think I've covered most of your questions. I hope some of it at least is helpful! You might find it helpful also having a peruse through the NRAS site nras.org.uk. I do hope all your questions aren't in the end necessary, but if they are I hope being here will prove valuable, whichever you're potentially diagnosed with. We are mostly RD'ers here but I we do have quite a few regular posters who have PsA. 😊
Well here's my halfpennyworth for what it's worth. At age 36 My feet and ankles started to hurt, esoecially first thing in the morning. When I put my feet on the floor as I got out of bed, it felt like walking on a pebbly beach for about half an hour. Had to crawl downstairs and drag myself up stairs by my elbows. I took my problems to my GP who did blood tests. He eventually told me I had seronegative RA and started me on NSAIDS. After 3 months of little improvement, my ESR went up to 86 so was sent to Rheumatology. I did have anaemia, but I've always had that. Rheumy confirmed diagnosis and started me on Sulphasalazine. 3 weeks later, miracle cure. I could walk normally and my banana hands went back to normal too. 31 years later and aged 67, I'm now seropositive and also have Vasculitis, Osteoarthritis and Osteoporosis among other things. Always exhausted and in spite of now being on Leflunomide, MTX, Rituximab, Oromorph, Fentanyl, Prednisalone Ican hardly walk, and fall asleep every time I sit down. My ESR is currently 5 as is my CRP. According to my rheumy I'm doing well. Hope some of this is of help.
All of those could be due to rheumatoid arthritis. I think swelling is likely to be visible and it is usually symmetrical. The anaemia is due to long-standing severe inflammation depressing the bone marrow. On the good side it can improve very rapidly once the RA is controlled.
I do not know if or why your hives should relate to RA, nor your pre-existing fatigue. Unless yourproblem is a true reactive arthritis, ie following an infection of some type unrelated to true RA. I think many of use were initially diagnosed with reactive arthritis , such as I was, but the diagnosis was amended to RA when it did not spontaneously clear up after a few monts like reactive arthritis apparently does. Good luck, you have all of these questions for your rheumatologist I think.
Hindsight is wonderful, and I think many of us can point to transitory symptoms that we wish we had paid attention to years earlier. I know I did. For several years it was only when I dug the potatoes that I noticed foot pain.... Eventually it went a bit wild, but until then was just grumblings.
Your low Vit D and anaemia can be a symptom too. But can also happen independantly does cause fatigue. Might be worth asking your GP about B12 too. You might find yourself feeling a bit brighter once these are treated. I can tell when mine are dipping as I start falling asleep all the time.
For RF, 20 is barely borderline, depending on the lab. But if you are working up to having psoriatic arthritis, rather than rheumatoid, then you are more likely to be negative for both this test and the anti-CCP ( which hopefully the rheumatologist will he k).
People with RA tend to have quite feisty immune systems - just aimed at the wrong target. So I don't think your tendency to catch things is related (not an immunologist tho', so only an opinion) but it could easily be related to having had anaemia, vitamin deficiencies and so on if that's never been checked?
I read a lot of research, and whilst I don't believe that the evidence is good enough to support extreme diets/particular supplements/etc there does seem to be a growing evidence that lifestyle - including what you eat - can make a difference. And especially to people at the earliest stages. So do think about cleaning up you lifestyle. I hope you don't smoke, and if you do please stop. If you are overweight then that is also a priority. As is exercise, even if you feel exhausted it can really help. And proper sleep. Then nutrition. There are loads of theories, but the starting points are not to eat processed food, cut back on high fat stuff and avoid massive amounts of sugar. And replace with vegetables. After that its trial and error to work out if you have any particular triggers.
Your experience, if you do have this, won't be the same as your Gran's. So stay positive.
I read your post with interest. Many of the symptoms you mention I experienced for years before I was officially diagnosed. For several years I had pains I would sieze up was told it was carpel tunnel of sciatica or collagen in ankle was damaged. I experienced real fatigue always tired some days so tired that I felt like I was pregnant again. Always getting colds,eye infections. Sore throats went on for several years. Stiff painful fingers joints told it was viral. Had blood tests in 2016 was borderline so no action wax taken by my GP. Although tested positive for RA didn’t mean I had it. Then in Jan 2017 I was so unwell I couldn’t get out of bed this had followed several weeks of flu like symptoms and about 3 courses of antibiotics again I was told oh you are just run down and to rest. The pains got worse and I ended up paying to seeing someone privately who diagnosed RA. I then went for a second opinion again privately and again was told that I definitely had RA. For years I was unwell with colds occasional rashes tiredness achey stiffness bloated ness just a general feeling of being unwell. I recently watched a documentary on u tube where they advised that you can detect RA in the blood up to 5 years before it is symptomatic. So in my opinion there is a pre RA and periods of stress and illness I believe can make it active. This is my experience.
I have found the site very helpful so many lovely people share their experiences both good and bad.
I always wish that people in your situation would get help in understanding what in fact is going on in their body, if there are things that can be corrected before jumping to conclusions and the use of hard meds. If you have the possibility to contact a functional medicine doctor this is the number one advice I would give. Your symptoms are definitely showing there is a low grade inflammation going on. The reasons for this can be many, not excluding the possibility of a process towards RA. You can however check your estrogene/progesterone balance. Often in favor of estrogene in inflammatory conditions ( as well as perimenopausal symptoms) This can easily be corrected with natural progesterone supplementing ( beware of the synthetic one). You can check your thyroid function, take a course of high Vit. D3 to get your level up, look into your diet perhaps try to eliminate gluten for three weeks, to see if it makes a difference. These measures may decrease your fatigue and in any case promote health. All the best. Simba
Can't agree with this enough. If you feeling plush take a food reaction test ( I used Cerascreen at £100 or therabouts - there is also the York test which is closer to £300). Once I stopped eating oats, wheat and strangely egg yolks my symptoms improved, though I don't feel 100% yet.
Hello again ER, Thought you may have some help when assessing your individual situation concerning lifestyle, diet and supplements from this link. Understanding better your immune response gives you a lot of important information. This link has good scientificly based info ( easily read).
Can’t add much to all the great answers above and sincerely hope you don’t have it but all sounds familiar: fatigue: I used to get in from work & sleep 3 hours, the only place I have visible red swollen joints were hands wrists but not others like shoulders, hip etc (still hurt). Mine really kicked off after severe ‘flu’ about year and half ago & had various diagnoses carpal tunnel, tenosynovitis, copd, asthma etc etc.
Symmetrical joint pain is a real ‘tell’ I think e.g. if one wrist, shoulder is affected, the other one will be shortly. With hindsight I believe I had it for a few years before but it’s a slippery little customer & all things you’d just think we’re age/joint issues. Hope you get rheumatology appt soon: they will consider so much more than just what’s visible don’t worry x
PS lab tests online are really good at explaining all the different blood tests
EagleRising, I can identify with your symptoms, the fatigue and brain fog oh my goodness the fatigue and brain fog are by far my worst symptoms. Like you, i can look back over my life and now can clearly see the fatigue for what it was (and generalised aches, that came and went, sore/hot feet that came and went), but it was always put down to something else.
I now have a diagnosis of seronegative RD, I've never had swollen joints, or a lot of pain, feet excepted.
My symptoms are fatigue +++, brain fog ++++, stiffness, full body aches and hot hands/feet which now have visible deformities.
So to answer your question , yes it sounds as if you have something going on and maybe have had for a while.
My advice is to see a rheumatologist and give them the history you have given us, be very clear about your concerns.
If you get onto a drug that suits you quickly you will feel so much better within a few months.
Methotrexate has removed the brain fog 95% from my life and the fatigue is manageable.
"... a feeling of well-being was established -usually within a few days...."
Doctors regularly prescribe prednisone, which can have nasty side-effects. Why? Because there is no money in pregnelone. I take pregnelone. Have noticed a slight increase in my libido.
If you combined this with progesterone I am fairly confident you would feel better quite quickly. My view on this is that generally humans were only programmed to last into their mid-forties. By then most of them were either gotten away with by inter-tribal warfare, starvation or disease. As such your hormones start declining- leaving some of us open to these nasty illnesses. Others are luckier.
Bicarbonate of soda- especially if you have reflux - 1 gram a day at night possibly replacing omeprazole.
You may well ask yourself why doctors aren't prescribing all this stuff when it can be beneficial.
2 reasons
a) these are freely available supplements. There is no incentive for pharma companies to research the benefits of these
b) Consequently Doctors have a menu of pharmaceuticals they can prescribe. They are limited to these or they might be struck off.
Also beware - these supplements may have also side effects, but the benefits outweigh the risks as every day you suffer from symptoms damage is being done to your joints and possibly your internal organs.
You hit the nail on the head with your explanation of why Dr don’t advise of these more natural remedies. The pharmaceutical industry is a business.
Thank you for sharing about the bicarbonate of soda I will try this have terrible cough caused by silent reflux. Trying to get off the omeprazole as I’ve been taking it since June.
1) I had no visible signs of swelling or redness etc. Still don’t have. My hands were extremely painful on the inside and I didn’t have strength to pull plugs out if the wall and hold certain things.
The GP I was lucky enough to see was really on the ball and put me on a fast track referral and said that nowadays if you are treated promptly there is no need to have bent fingers etc. I was diagnosed with sero negative inflammatory arthritis about four years ago. I’d say I had been so stiff I was unable to move or do anything much first thing in the morning for years and years before my hands really started to hurt - nothing to indicate a problem from the outside though.
2) I was always tired. Still tend to be that way. Like you say hobbies - by the end of the day I just don’t want to go out and do anything.
3) Don’t know the answer to that.
4) I’ll be interested to see the answers you get to this. So far since September I’ve had two cold sores on the roof of my mouth. My mouth feels so painful, keep getting swollen glands under my chin and under my tongue. Nothing sinister to see inside my mouth according to my dental hygienist yet it is painful. I keep getting tendonitis too - right foot once, left foot twice and also across the back of my hand. It’s so painful.
Two of my immune system bloods were only just within the range and the third one is well below the lowest end of the range so I think my immune system is trashed just like you.
I always seem to have a virus of some sort. I feel such a wimp as if people must think I’m a real hypochondriac who always has something wrong with them, at least I’m retired and don’t have to use up my holidays though, I can imagine how difficult it must be for you.
Funnily enough my husband said this afternoon that he thinks it is possible that all these weird things might be related to my inflammatory arthritis and I was considering posting on ere to ask if others found that too.
I hope you can find the answers and get the treatment you need to get you back into tip top condition.
I don’t have enough expertise to answer all of your questions I’m a little lost in the midst of coming to terms with the fact I have an autoimmune disease/condition/insert your favoured term here😁
I’ve been put on hydroxy and I have had psoriasis mildly for years previously and until he saw my blood results the rhumy said it was psoriatic arthritis.. he then told me it’s looking like Rhumatoid arthritis and at a routine drs appointment I noticed my file said palindromic Rhumatoid Arthritis as my diagnosis... if they think it’s palindromic Why are my feet damaged 🙄
Either way psoriatic or Rhumatoid the treatment plan is often the same to begin with, I would just concentrate on getting your diagnosis and getting the treatment you need xx all the best to you xx
I was diagnosed with chronic fatigue in my 30’s, inflammatory arthritis in my 50’s, and I’ve had psoriasis off and on since the age of 12. One thing I’ve learned is that we all present differently and there are no real rules for it. My regular blood work actually looks good, no RA factor and low inflammation markers. My liver enzymes are elevated which can be controlled with RA meds, special inflammatory blood tests are high, and my joints ache and hurt but aren’t visibly swollen unless I’m in a flare and the flares aren’t always symmetrical for me. Keep in mind, I have been on meds since 2013 so have no idea what I’d feel like without them. The fatigue has always been the worst of my symptoms as I was always active and independent, working right through the fatigue whenever possible. Since diagnosis, that is no longer possible. I’m currently taking azathioprine and Humira.
I hope you get some answers and I pray it isn’t RA.
There are no tests for RA it is diagnosed by symptoms. I have RA and I don't think you have it, yours sounds more like Osteoporosis. You mentioned the C reactive proten test. This test if for the presence of inflammation and if yor have untreated RA you would have inflammation. When I cam down with it I was very weak. I could not even open the door.As far as the Rafactor most people with RA have a much higher level than you and many people that don't have RA have some of it in their blood. I have no visible swelling but my doctor is able to feel my fingers and toes and test how much is there. As far as fatigue I do have that.
Good luck There is no real test for RA they are testing for things like inflammation or symptoms and you don't really have them.
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