It seems like since my initial symptoms started, I've done nothing but worry, stress and freak out over every new ache, and pain. It makes me wonder if I'm borderline hypochondriac , or if I'm just too sensitive to my own body...
Case in point, while at work today I began having difficulty breathing, and when I would try to breathe deeply, I'd get a sharp pain in my collar bone. I broke rule 1 and googled the symptoms...annnnd came up with inflammation of the fluid around the heart, which is terrifying...but am I being sensible?
How does everyone handle anxiety and stress? I can't seem to get a hold of myself anymore.
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JamesPlagued
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James i think we have all googled something when it happens to us.You are frightened that something is serious. We have a serious health problem with ra alone. Go to your chemist and make a friend of them as they will advise you without going to the drs all the time. My hubby and i both take the advice of our chemist(i can't spell the other name for them very well) If he thinks it is worth seeing the dr for they will tell and they will tell you if they don't know as well. You will worry if something new appears if i have a concern i am also able to ring my rheumy nurse so get your nurses number and check with them as well. It never hurts to ask and sometimes it is helpful and sometimes it might even need more help which it means it has paid off to ask.
Sylvia.xxx
Hi James,
I think this is a great post. I'm sure many of us have had similar thoughts.
When I was a young woman I thought of myself as a bit of a weakling. Then I gave birth to my second child and it was horrendous. Fortunately my son & I survived unscathed. It was then that I realised that actually I was as tough as old boots.
I do realise that you're not exactly going to test this out by giving birth any time soon, but the same principle applies. Generally the human body is incredibly resilient, especially young human bodies. I know bad things happen to people, but statistics are very much on your side, even with inflammatory arthritis.
My experience of PsA is that it's a bit of an evil joker. I'm sure the same applies to RA. I get a lot of enthesitis which, as far as I know, isn't particularly damaging in itself. But it does cause a whole lot of seriously alarming pains, most of which are fleeting. I get pains just about everywhere including the chest which is the entheses of the ribs I think.
I don't like anything about having PsA, but I've come to realise that it's not likely to do me in. Every now and then I do freak out about something - most recently a nasty little skin eruption which I decided was skin cancer. It's actually impetigo. Every time I've decided I'm dying, turns out I'm not.
It is normal, I reckon, to go through the feelings you describe. Do get checked out if worried. But the main thing is to get a diagnosis, get the best treatment, remember that you are still young and strong and that you do not have a life threatening condition.
If anxiety gets too bad do consider counselling, you didn't plan on getting this condition and it can play havoc with the mind. No shame in getting some help and most rheumys know very well that inflammatory arthritis can cause depression and anxiety.
Counseling is something that I've pursued in the past, but multiple doctors telling me that how busy my work schedule is wouldn't work with their methods put a bad taste in my mouth...I really should try again, though. I think at this point, I at least need a means to cope with the anxiety without freaking out so bad.
It is an hard thing to balance James. I too felt like a hypochondriac when I had to keep going to the Drs but it was usually a good thing I did. We get so many weird and wonderful aches and pains you just never know any more what is what. I said that to my GPO and he told me if I am worried come in but as you say where do you draw the line. I operate on the principle now if it lasts longer than a week and it hurts a lot or I am truly worried I go to the GP. Mind you I just left an ankle problem go for 8 weeks . hahahah It's a tough one but you get to know your body and when things just don;t feel right.
It makes sense to research on our symptoms. Maybe it is even our responsibility. But the line is drawn by our reaction to the info that we find - do we reflect and take a breath before responding? Or do we go the knee jerk route? Do we panic or do we stay calm, focused and take well thought out, strategic actions?
I have found that meditation helps me stay grounded when the earth shakes, so to speak. It takes a while, but it eventually takes you to that grounded feeling. Yoga and taichi ?
That's a great way to look at it. Yoga was a possibility...definitely looking more like a definite now.
Exercise can help a lot too. Not easy with bad knees, but not impossible. As long as you don't overdo it it is great for the joints and delivers a nice dose of endorphins to counteract the anxiety.
Hi James try not to beat yourself up. It can take a long time for a firm diagnosis and coping with the pain and new things happening to you is frightening. It sounds as if you have a good Doctor now who is on the case. I remember in the early days feeling totally out of control with my emotions. Just take one day at a time, we are here if you need support and as sylvi said contact professionals if worried. Xxx
James I'm a very similar person in the way I've responded to having RA - for four years now. I have a pretty sensible and patient GP and I email him or leave the odd phone message now about new symptoms or an image of a lump on my finger or a link to something I feel might apply to me. I have had many symptoms which have been drug reactions and some that have been minor blips which I've felt like a hypochondriac even mentioning. The trouble with RA is that it is a multi system disease for some of us so there can be bits of Sjogrens, Vasculitis and Raynauds as add ons - plus many other non life threatens symptoms - which can be just as a result of anxiety - but might be relevant to our doctors. When this all started I recall him saying to me that it was understandable that every little symptom was potentially something to worry about but I would get niggling little things like the rest of the population.
If he had time I think my GP would look more into the possibilities for me as my RA has followed a very unusual path. A few weeks ago I was given Tramadol for upper tummy pain and emailed the two GPs to check I could take it with codeine and paracetamol. They didn't reply and within a few hours I was admitted to hospital with an acute abdominal sepsis - was kept in for a week on IV antibiotics. This followed flu and a chest infection, and before that something else. I think the GPs may have at last realised that for me, having RA (even a non erosive type) has meant that one way or the other, smaller things such as flu and gallstones, can turn into potentially life threatening things such a pneumonia and sepsis.
In my case this is probably because I have been off all RA meds for 9 months with my rheumy's support - because I'm drug intolerant and he felt my RA was sufficiently non erosive that there wasn't too much to worry about. So my immune system has turned highly disfunctional and I have been seriously ill this year as a result. I may not have swollen joints but my pain is to be taken seriously now because it matches my high inflammatory markers and I have a very high pain threshold.
But I'm 52 and look after myself very well and have learned through experience that I must note down smaller symptoms which bother me in a journal. Give them a few days and if they persist then ask someone who can put your mind at rest or push you to see the GP or even the rheumy. If our Heath professionals aren't getting the bigger picture then when I suddenly mention that I can't smell anymore or have sores inside my nose or am wearing a halter monitor one day when I visit because of heart palpitations (which turned out to have been caused by a drug they were prescribing) then I will feel like a total hypochondriac. But hypochondriacs don't send emails asking whether it's okay to take Tramadol with codeine and paracetamol every four hours - and I think/ hope I've taught myself and my GPs and rheumy a lesson about relying on my resilience this time!
So don't ignore strange symptoms but as Sylvi and Postle suggest, tell your pharmacist or a medically trained friend or look up on HU and write these down in journal form so you can review and sort out the wheat from the chaff - some will be important clues to self management while others will just drop off the list as ordinary or anxiety related.
Wow, I'm sorry to hear about your ongoing struggles! The thought of your immune system function causing you to develop sepsis is terrible. The fact you're as collected and cool as you are is amazing. Thank you so much for sharing.
Thanks James. I just re read what I'd written just now and thought that, far from cool and collected I rambled about myself at length!
I really just meant to say that this post is gutsy and expresses well what most of us feel. We worry that we are turning into hypochondriacs - or that others will think we are. But actually, with a diagnosis of RA, hypochondria goes out of the window and something else takes it place I think - hypersensitivity perhaps? Tx
I'm a rambler myself, so maybe that's why I understood it so well haha!
That's a good way of looking at it. I've also heard that hypersensitivity is actually a very real issue in the world of depression and anxiety. I used to worry about every small ache and pain in my body and anything that would change. Definitely sounds the case.
Now, I feel the changes but don't know if they're legitimate or not, lol. Gotta fight the good fight, I guess.
My hypersensitive composer/ musician friend with Sjogrens explained to me the other day that hers feeds into her productivity as a successful creative and is a bonus as well as a bit of a curse at times. A positive approach that I aim to adopt myself when I start feeling better!
My mother had RA and it devastated my teenage years, which is probably why I'm often still 16. I've had ups and downs but try to keep most of them to myself - you all out there don't know the half. I try not to identify as someone who is ill. I have a lot of friends who come and share things with me and i find that distracts me from my own worries. When I find myself saying sorry because I can't do something I remember that's because I don't identify as being disabled or sick. Denial perhaps, but most of the time it works
Hi James, this is a great post and one that I'm sure a lot of us can identify with...I know I do!! I have to wait weeks for a Rheumatology appt and even though I can get to see a doctor fairly quickly to see my Doctor of choice can involve a long wait!! It's been a case of learning on the job so to speak and finding out about RA myself but this site has been invaluable. I'm really trying hard not to let this condition define me and have really been getting into Meditation and Mindfullness as I think it will help a lot with the stress, anxiety and uncertainty we face, I'm not there yet but one day I will be hopefully. I do believe though that once I have found a medication that I can tolerate and symptoms hopefully diminish that it will slowly go to the back of my mind and that I can get on with living! Good luck and we need to lay off googling!! 😊 😊x
Hi James, Ruby Wax has written a wonderful book on mindfulness which you may find interesting amusing and may even provoke a few 'lightbulb moments', it did for me. I have moments of great anxiety that causes physical effects and am currently attending the stress and anxiety clinic, suggested by my GP. You're not alone my friend, or mad! x
I will have to search for this! My anxiety is definitely causing physical problems, both of the phantom pain variety, and actual problems (blood pressure is going up and up), so any means possible that could help will definitely come in handy.
Also, don't totally poo poo antidepressants James if you're really struggling with depression and anxiety. I have been taking Sertraline 100mg for 2 weeks now after taking 50mg for a month first and I feel an incredible difference. It is helping me to get a handle on my anxiety and over productive brain habits and I 'now' feel capable of tackling what's really going on at the core ( so to speak). It's enabled me to 'rationalise' generally; which is the best foundation to start from I think. It's basically given me hope. I truly believe our brains and our bodies run in conjunction with each other......so, if you can heal your mind.......it will in turn help to try and heal your physical self. * Just my pennies worth x
Thank you so much I definitely think our mental health can affect our physical, you're definitely right. My biggest challenge will be finding a good doctor at this point.
Hello! I'd just like to agree that this is a really normal way to feel, especially newly diagnosed (iam too!). Everything feels worrying but I think given time we'll hopefully get used to aches and pains and get to know what's normal for us and when to seek extra help. its a scary place to be though, but hopefully through meds, nurses, experience, google and this forum things will start to feel more manageable in time.
I'm still awaiting some kind of diagnosis unfortunately. My doctor wants to wait and see what happens before she rushes in...which is fair, because my symptoms are so on and off random that it's hard to get a feel of it. I think the not knowing is actually making it all a bit worse.
It sounds like your doctor is doing the right thing which is good but really frustrating for you I can imagine. The not knowing can be quite worrying because its hard to move forward when you don't know which direction to go in. The not knowing is hopefully only a temporary thing though and given time they should have some answers and get you on the right track. I'm sorry there's no solution right now but we're all here if you need to talk. Take care x
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