I have severe, sudden/onset, RA & spontaneously experience extreme feelings of fight-flight or freeze, anxiety, depression, & irrational thinking.
Wondering if my brain is inflamed, as I also have painful neuropathy & joint destruction in my ankles & feet.
Rheumatologists & GPs (USA) fail to address this concern, other than on visit-checklist that asks if I'm depressed.
Any solutions? (Experiencing some relief, now that pain is controlled on JAK inhibitor, but still having periodic, spontaneous, cognitive &/or psych issues.)
Antidepressants made things worse.
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Hisue
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Being diagnosed with any serious condition,including RA has different affects on different people .
Some manage eventually to accept their condition without too many problems, others in various degrees feel as you do & it takes them a little longer to live easily with their condition.
You say your doctors are not worried, & you can read here how differently people deal with their RA . You also say things are improving being on a Jak inhibitor,so it does sound as if you are on the rights meds for you.
Let’s hope this improvement continues & that you will soon be living more calmly with less anxiety.
Thanks, but never had these problems before & they accompanied the RA onset.
Asking if actual biological changes occur in the brain with RA, as most of these brain-issues subsided once RA inflammation, pain & joint damage were controlled.
You can have these feelings without having RA and I’ve not been told it’s being caused by brain inflammation. Let your GP know the anti depressants aren’t working as there are others to try. Have you thought about having some counselling or trying CBT ( I have found both have helped me)
There are other Healthunlocked groups you might find more helpful with this, specifically for these feelings
Your previous posts ( which come up on related posts to the right of the current ones) show you’ve asked the same question four years ago so it seems you’ve had no resolution to your problem for all that time. Really sorry you’re still in the dark about what’s causing your anxiety.
Your question about inflammation of the brain due to RA is not something any of us on here can answer and you would have to consult detailed research papers. It stands to reason that if you have systemic, long-term inflammation then your brain will be affected by responding with cognitive symptoms as its balance is interrupted. The drugs prescribed for RA - if you have the right ones for your body - will reduce overall inflammation and therefore improve brain fog and cognitive functioning.
Unfortunately, some of the drugs prescribed particularly steroids and some of the older DMARDs can cause psychiatric issues for some people and so it’s a vicious cycle and a case of trial and error to find the appropriate medication.
Also, as you know, acceptance of the disease has a major effect on how you feel. Hopefully, as you take your JAK long term your symptoms will be alleviated and things will settle down.
You are so right about acceptance..I think if you can work through any doubt & anxiety & accept RA is life long …..& although one may get relief from medication, one’s personal acceptance is vital if we are to live a life free from denial of how RA can be controlled very differently for each individual.
Sorry, but I beg to differ. There are medically/scientifically trained members on board here who have provided me with good research studies, help, referrals & info on RA in the past. I am reaching out to them.
Your informing me that I posted a similar concern 4 years ago is rather callous & inconsiderate to say the least: as I am still struggling, was at "death's door" & I do not need further discouragement.
Many disease treatments & medications have been approved since my inquiry 4 years ago.
Science, research & medicine do not stand still.
My own research has shown that depression & anxiety are now linked causally to brain inflammation. I am a trained, degreed, biologist.
I am very thankful for all the info I have rec'd from kind, supportive HU participants, in the past.
Hi Hisue, I'm a biologist too 🙂. I came across this fairly recent paper though that looks interesting (perhaps it's one you already are aware of) ... ncbi.nlm.nih.gov/pmc/articl...
Many thanks for the link to the reference which provides many avenues to think about and look into further. There are several recent papers showing that the blood/brain barrier is much more permeable than previously thought. However, it's difficult to see currently what practical help this is for treatment, except that treating the inflammatory process may help both.
To quote from that paper "The immune system and nervous system are not two separate systems, and there is a close dialogue and communication between them. "
Thank you very much for the link. In 2015 I got inexplicable anxiety, then a high rheumatoid factor was identified, and 2 years later developed RA for which I was prescribed sulfasalazine.. Fortunately for me the sulfasalazine not only reduced the inflammation but also the anxiety.
A very interesting read. Some was beyond me and due to poor concentration took me a while to read. However I'm pleased to have read the paper and found it informative. 🌻
As a trained Biologist you must know that all auto immune diseases affect the central nervous system….but in very different ways. In some it will be minimal & in others life changing.
All cns disturbances need individual attention..which is why I suggested a personal consultation with a neurologist or a neurophysiologist could help you.
It could be you are chasing something that may not exist. Why not try what most of us do…we stop spending fruitless hours searching & making ourselves miserable & accept for now what will be,will be.?
It’s really surprising how that act of acceptance really helps.
This is my final word , please take it in the spirit it is given…just try to relax & enjoy life….who knows it could help you feel better.
If I had stopped searching, I would currently be dead. Some of us here have young families & need to function.
A Good Samaritan pharmacist intervened on my behalf & got me on a particular JAK that saved my life.
There are new DNA tests & meds that help with targeted treatments. (e.g., Ketamine, a former illegal "disco-drug" is now used to reduce brain inflammation and lift depression.)
Science & medicine are not static. New discoveries & clinical trials, are happening all the time.
If scientists were complacent with the status quo: we would still believe the earth was flat & the sun traveled around planet earth.
I completely agree with everything you have said. The same thing happened to me when my RA properly kicked off. It was extremely aggressive and disabling, and my mental health plummeted to unimaginable lows. I felt like part of my brain almost turned itself off, and I couldn’t function at all with what was left ‘on’. IV ketamine saved my life. Have you tried it? I am now on a treatment that is working for my RA (thank god), and I don’t feel the need to have any more ketamine infusions, or take anything for depression/anxiety. I do have other neurological symptoms at present (dreadful intractable migraine and vestibular issues) I’m sure it’s connected too but as yet haven’t seen a neuro. Definitely interested in emerging research on this topic. Sorry I can’t be of any help, just wanted to say ‘me too’ and that I hope you are ok! I’m glad you got on to a JAK that’s helping you.
P.S I had to get a psychiatrist and a therapist when all this happened, and they both agreed that my mental health issues were caused by inflammation and disease activity.
I can't begin to express how much your reply has cheered me. A million thanks! How kind of you to share your experience & provide great NEW treatment information.
I need to express that it's not productive or helpful for a struggling, veteran RA patient to receive the same old depressing info: "be positive ", "take antidepressants ", &/or "just accept it" advice.
I still feel like I have the flu every day (for years). Perhaps their onset was less severe & gradual &/or is manageable or they are quite old & no longer need to function at "full throttle".
Everyone suffering with RA is unique. I felt "slapped", by a member reprimanding me for posting something similar 4yrs ago! Seriously? & others suggesting commonly known "RA brochure" info & "get over it" philosophy. Disturbing, unsettling & abrasive. I spent the whole day in a "tailspin" & upset.
And yes, "the pen is (still) mightier than the sword" & insensitive, "old-news" replies "can push long-suffering, distressed RA patients right over the edge".
Health Unlocked has been my best source of information & support for several years. So again: THANKS so much to you & all the members who cared & replied with helpful (& NEW) scientific treatments, info, & research studies.
I think you should have worded your post differently as you asked for advice so people will try to help you, if you only wanted a specific kind of advice from a qualified person then it would help and save people’s time to know that. People here can only give their experiences and if it’s not what you want then you shouldn’t make them feel they’ve upset you when all they’re doing is trying to help. Pointing out you have asked the same question a few times gives you the opportunity to expand more on what you’ve tried from the help in those past posts, again saving people’s time otherwise you end up being mardy with people for just trying to help. 🤷🏻♀️
You cannot be serious. YES INDEED - They have upset me. Callous & invalid responses ARE upsetting. And you're suggesting that I should have "worded my post differently"? Ouch. Perhaps try answering with facts & compassion.
I own my feelings, severe RA disease & posts. My life is in shambles due to the severity of this disease, but I "press on".
Scolding a sick person about posting (a related query) 4 years ago, advising someone to just resign & accept, or to take another antidepressant is just inappropriate (as is your remarking: "I've not been told" of any brain-body association, which is just misinformation). These comments have caused me both emotional & physical distress. I took to my bed.
Thank goodness for savvy & sympathetic members. They have helped me on numerous occasions over the years.
They’re invalid ? they were trying to help you, you have asked more recently the same question too so they’re obviously trying to find out why. If you’re not getting the responses you want then there is something people aren’t understanding in your wording of the post, it’s not just them. Your replies to those people elicit responses you then get upset about, do you think your reply upset them and maybe wasn’t the best way to reply to those trying to help?
It’s a fact that my anxiety/depresdoon has never been linked to my RA and I’ve asked many times.
I’ve not told you to resign and accept at all.
Stating there are other antidepressants to try is a fact too and it can take many tries to find one that suits you. I was trying to give you hope that the next you try will work 🤷🏻♀️🤷🏻♀️
I think irony is not that poster’s strong suit! You are right to point out to her that her ungracious replies to kindly and well- meant advice will also have caused upset to those who took time to try to help. I hope she gets the psychiatric help she is looking for.
"Depression is one of the most common comorbidities in RA (World Health Organization, 2017; Baerwald et al., 2019). Depression can be triggered by multiple stimuli such as repeated physical pain, fatigue, gradual loss of function, lack of social role, and financial burden. In a cross-sectional study conducted in 17 countries, depression was the most frequent complication in RA, with prevalence ranging between 14% and 48%."(Nerurkar et al., 2019)
Kitty I too read the original post as looking for help, and the reply from Amnesiac 3637 seemed to be appreciating that it must be hard for you Hisue to be still suffering with no further help (she wrote that she was 'sorry you were still in the dark).
It is good that science is moving on and I was interested in reading how RA affects the Central Nervous System. There is a need to look for answers and sometimes a need to accept having a long term illness.
Hisue, I hope if you re read the posts, that as it seems to me, I don't think anyone was trying to be unhelpful to you. Rather crossed wires about what you were asking. I am glad that you have fought for and found appropriate treatment for many of the RA symptoms, and hope that you can find ones to help you further. There are differences in the health systems in the US and the UK too.
Not at all. I feel like if you haven’t experienced something similar, you couldn’t possibly even begin to try to understand. It is really difficult.
I think ketamine was successful for me because it enhances neuroplasticity almost instantly, AND works as a potent anti-inflammatory. I think it should be more of a mainstream treatment tbh (for both treatment resistant depression and chronic pain). Yes, certain SSRI’s can have an immunomodulatory effect, but in cases like ours they just aren’t strong enough so appear ineffective? That’s my guess anyway!
I’m so sorry you get the flu symptoms daily 😔 I spent a couple of years thinking I was constantly incubating something. It’s rotten!
I hope you continue to get relief from your JAK and find something to help with the mental side. I know how disheartening it is to get ‘bog standard’ advice when you are literally suicidal. I wish it were possible to breathe, meditate and eat your way out of a situation, but when your immune system is attacking every part of your body, that’s nigh on impossible! 🙈
Read Professor Edward Bulmore’s Book The Inflamed Mind…a good book for the layman to understand how the immune system could be involved in the relationship between mental depression & physical inflammation.
RA can cause inflammation anywhere throughout the body , to any tissue or organ and inflammation flares up, so it is worse sometimes .The body is complex. and biochemical changes can affect the brain and moods just like hormones can. For example, I read that PM T was caused by fluid retention in the brain tissue and it could be something like this for you , whether RA related or not. I try to be upbeat and positive most of the time and rarely complain or talk about aches and pains to family, friends, or work colleagues. I just get on with it and count my blessings, but we all have low blips, it is part of being human. Living with pain is far from easy too . Try and give yourself a small treat every day and do something you enjoy to improve your mood. Hopefully the flare you have will soon pass and you will be more positive again . Only you can overcome this through positive thought. Be strong.
I hesitated to post it as although sections are interesing I found it garbled, and other reviews are also not brilliant
“The book is, however, full of contradictions and unsubstantiated claims. That bodily inflammation might cause a lowering of mood is an interesting enough theory but that is all it is. Bullmore fails to back this claim with any kind of solid evidence and falls into the trap of making the facts fit the theory, which will never pass muster under scientific scrutiny.”
And more damning
“basically an ad for developing a pill for inflammation…….The author works for Glaxo-Klein-Smith so one can expect promotion of a pill in our pill-hungry world.”
Professor Bulmore doesn’actually”.work” for GSK…..He leads, or led, I don’t know if he still does ,research into new anti-inflammatory drugs for depression.
He is a very highly qualified consultant psychiatrist, and was …maybe still is Professor of psychiatry at Cambridge University. His book is written with humour as well as information .
I think having a contract with GSK can be defined as working for them. I wasn’t as positive as you about the book. Some interesting sections but I remained ambivalent.
I was going to suggest Edward Bullmore's book too. Yes, the book isn't a peer reviewed paper, but at least it gets the idea through that inflammation can affect the brain, and for some people their depression isn't a psychosocial problem but a physical problem. This is going to be very difficult to accept for those researchers and clinicians who have based their whole careers on the psychosocial and psychoanalytical basis of depression and anxiety. This requires a shift in thinking and letting go of long held views.
What I really liked about the book the most was his story about how he went from rheumatology to psychiatry and saw the patients as more than just 'depressed because they have RA'.
Edward Bullmore and others have written peer reviewed papers on this which are available through Google Scholar. They have been looking at subgroups of people with inflamed depression.
On a personal note, when I was breastfeeding I could always tell when I was about to get symptomatic mastitis. 12-24 hours before tissue redness and inflammation appeared, I got deeply depressed to the point of kicking everyone out of the house once. The second time I felt the depression coming on I politely asked everyone to leave (we had builders in at the time) and took evasive action to clear the blockages in the breast before it got any worse. So it was a relief when the link was made between inflammation and depression for me.
I do not have RA, I have Giant Cell Arteritis and Polymyalgia Rheumatica. When I am in a "flare" I experience a type of depression that is it's own beast. I have experienced regular depression at different times in my life. The depression that goes with inflammatory response is different. You are not imagining it. As your inflammation is successfully treated the depression will improve. Are you on medication for high blood pressure? I can not take anti-depressants for this type of depression. They do not work and the side-effects are worse than the illness. My primary care provider put me on the high blood pressure medication Verapamil. Verapamil also treats depression. It seems to be the only thing, along with Actemra, a biologic, that rid me of the horrible charmed demon that is inflammatory depression. When my SED rate is sky high I also have panic attacks, especially at night. I am on a CPap machine, and was having a ton of panic attacks in my sleep. I no longer do that. I am also in kidney failure. Biopsy shows protein crystals in my kidneys. I see kidney doctor the 17th of this month. They suspect another disorder I have, MGUS. They suspect MGUS has become MGRS. ( a kidney disease) If so I will be starting chemotherapy. My point is, whatever you do or take, watch your kidneys. Auto-immune inflammatory response, especially the attending vasculitis, is very hard on kidneys. Many OTC drugs are hard on kidneys, some anti-depressants can be extremely dangerous for kidneys, i.e., BuSpar. Ask me how I know! Hang in there, you are not imagining it.
I just want to say that I really appreciated your post, and the discussion it kicked off, and as I replied to Gottarelax: "Thank you very much for the link. In 2015 I got inexplicable anxiety, then a high rheumatoid factor was identified, and 2 years later developed RA for which I was prescribed sulfasalazine.. Fortunately for me the sulfasalazine not only reduced the inflammation but also the anxiety."
I had taken antidepressants some years before (with some beneficial results), but found that when I took them for the anxiety that preceded the RA I found that I was allergic to them (swollen lips in particular) and had to stop - and nothing else was done specifically to ease the anxiety.
I found Edward Bullmore's 'The Inflamed Mind' a good read and helpful in that it provided at least an explanation - which with further research insights seems to be being basically borne out.
Good luck and I do hope you will post again if you come across any new developments.
I experienced anxiety for the first few years of diagnosis and up until my biologic worked; Being in my 40s and never experiencing this before it hit me really hard and I can totally understand how you feel.
I can't help with pointing out any new research but I truly believe Inflammatory arthritis and anxiety are linked in a physiological way as well as a psychological way, it's not just as case of accepting it .
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