RA locked me in fight-flight-freeze mode?: Does RA... - NRAS

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RA locked me in fight-flight-freeze mode?

Hisue profile image
18 Replies

Does RA permanently change brain chemistry?

Ever since my sudden severe RA onset- I have been stuck in fight-flight-freeze mode. The anxiety (sometimes I actually have to pace), fatigue & depression are awful.

I’m finally on a JAK that controls pain & joint damage for over a yr- but still stuck in a daily fight-flight-freeze (fear) mode.

Why doesn’t the body self-regulate: calm down, & return to normal? Can I do anything to calm down & return my psyche to normal?

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Hisue profile image
Hisue
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18 Replies
Fruitandnutcase profile image
Fruitandnutcase

What about something like CBD some places you can self refer otherwise I suppose your doctor / rheumatologist could direct you. What about meditation? That’s supposed to be good too. It sounds like you need some sort of help to get back on an even keel but it’s hard to advise when it’s not something you’ve ever felt yourself though. Hopefully some9ne will come along with suggestions.

KittyJ profile image
KittyJ

I would speak to your doctor as there may be something else going on other than RA that they can help you with maybe medication or some kind of talking therapy, don’t suffer in silence, unless you tell them how you are they can’t help you 😊

AgedCrone profile image
AgedCrone

Have you thought of having some relaxation therapy?

Tension can cause what you describe…..I think most people take a while to accept the diagnosis of RA…but once you accept & believe things will get better…you will be able to relax & will cope better.

On the whole…it’s not a good idea to rely on medication to solve the situation ….better to work through things until you feel better.

springcross profile image
springcross

Hi Hisue. I agree with Fanc's suggestion about trying meditation. I'm not sure about now but there used to be some YouTube videos about Yoga Nidra which were good, it's similar to meditation but more aimed at stress and anxiety if I remember correctly. Good luck, I hope you feel better soon. x

Kati66 profile image
Kati66

Hi Hisue,

That must be really difficult to cope with being in that hyper vigilant state. I’m a qualified counsellor and therapist and come across clients in similar situations. It is normally related to trauma or PTSD. I wonder if the sudden shock to your body of the severe flare has caused this reaction. Like others have suggested, speaking to a therapist would be a good idea. We have various ways of working with clients to calm the flight/fight/freeze response. This allows the nervous system to get back into a regulated state. Hope you are able to find someone to help.

Best wishes, Karen xx

HappykindaGal profile image
HappykindaGal

All these suggestions are excellent. I did have counselling and the psychologist thought I had a form of PTSD. It took some work and a few sessions but was absolutely worth it.

Unfortunately the counsellors in the NHS are a little hit and miss and I believe the waiting lists are forever. However, there are many private counsellors that specialise in trauma that may be great for you. I’d urge you to speak to someone sooner rather than later as you don’t want to continue living like this 💕

Fruitandnutcase profile image
Fruitandnutcase

Just had an another thought - have you had your thyroid checked out? Thyroid problems can cause similar symptoms. It would be worth asking for that to be done - you want a full thyroid check plus antibodies and B12, vitamin D, folates and ferritin - not just TSH - a lot of doctors think that is enough when it isn’t.

Green230461 profile image
Green230461

My doctor gave me a course of three sessions of hypnotherapy to calm me. I thought it was a stupid response at the time- that old party trick cluck like a chicken- but it worked. Speak to your doctor for help. Good luck.

stbernhard profile image
stbernhard

Hello Hisue, my advice to you is to register with NRAS. They are wonderful people who can help you. They also have several self-help programmes, which are very useful. Give it a go, please. You have nothing to lose. All the best.

Happy5 profile image
Happy5

Not sure how early on you're into your treatment?

When I was first diagnosed and started treatment I'd say I went into a "grief" or loss process as if saying goodbye old life hello new existence. I had bouts of depression throughout my life but found exercise, getting out etc would get me through. Now with RA I got very depressed and couldn't shift it the usual ways so I talked with my GP who provided antidepressants, which helped at the time.

I was in flare ups and pain, and there's research ( been discussed on here else where, link someone please? ) which suggests the inflammatory aspect does put pressure on the brain resulting in depression and other emotional ramifications from this. As well as the anti-depressants I referred myself to talking therapy via the phone which again I found helpful. I also use reflexology, and body massages which I love. I had to have steroid injections at times to reduce the flares and pain.

I'm now several years on and in remission interestingly I had both hips replaced which stopped pain in those areas overnight, since then RA has stabilised too not sure if a co-incidence ?

Suggest you discuss things with your RA team , GP , other professionals to help you?

Djlr profile image
Djlr in reply to Happy5

BEWARE of STEROID INJECTIONS

It is the DEVIL we LOVE for IMMEDIATE “relief”, but it’s the “DEVIL our BODY will HATE” (with Osteoporosis in EARLY LIFE) that will not be FIXABLE.

So, try to use other BIOLOGICS, ETC. to get RELIEF from JOINT PAIN, if possible.

hopkinsarthritis.org/arthri...

They don’t tell us the LONG TERM “effects” of STEROIDS on our BODY. THEY just give us a “SHOT” or BOUT of PREDNISONE “pills” - sometimes to GET “us” OUT the DOOR.

We end up needing HIP REPLACEMENTS, SHOULDER SURGERY, etc. when STEROIDS may have made our PROBLEMS worse 😟

- Reading a few “Articles” below will help EDUCATE “ourselves” in becoming as “proactive” as possible in how MEDICINES can affect us.

Occasionally, it’s needed, but use SPARINGLY💜

healthline.com/health/osteo...

creakyjoints.org/about-arth...

health.ny.gov/publications/...

pubmed.ncbi.nlm.nih.gov/894...

pubmed.ncbi.nlm.nih.gov/293...

Dobcross1 profile image
Dobcross1

You have my total empathy and sympathy. I feel I've been like this since diagnosis in 2018. I feel like my whole personality has changed and it's impacting my life and relationships (especially with my husband) but I feel powerless to fight it. I'll be very interested in the replies you get and hope that you start to feel better soon x

Amb1xkr profile image
Amb1xkr in reply to Dobcross1

Hi Dobcross 1 I was diagnosing in 2019 with RA and AS and you have described exactly how it has impacted on me and my life. I feel the impact with myself and husband particularly I don’t think he has accepted my illness and so doesn’t realise how it has changed my outlook. I’m struggling with depression as a result. I can’t work and he won’t take time off. This disease robs you off your confidence so much.

mandy141 profile image
mandy141

Hi Hisue

I was diagnosed with RA in 2000, there are so many different kinds of things it can do to your body and brain. It effects your mental health and can cause depression as RA effects not just your joints but all your vital organs in your body. I think the best thing you can do is speak to your Rheumatologist who specialises in this area. I agree with meditation as this helps with anxiety and depression as well as relaxation. What meds are you taking for your RA at present? I hope you can find some help to be able to deal with this situation. Keep strong and best wishes

Tkat10 profile image
Tkat10

hi, I too had these feelings and reading through everything everyone else has written yes ra does impact on people in many different ways. The research questionnaire I used to complete (for nearly 20 years at every attendance) asked about mental health, anxiety and depressive feelings. So my assumption is that as they asked these questions there has to be commonality in people’s experiences mentally to a) ra, the diagnosis, the condition and ability to cope with the ongoing illness. B) the drugs given to treat ra, I for one would not have methotrexate again as I was in such a state mentally and physically (with the exception of my ra which was in remission).

I think there is in a good rheumatoid arthritis service an understanding that there are so many different ways ra can impact on an individual that they are in some cases offering support group sessions with ra nurses running them.

Another thing is do you have an employee assistance program where you work (not sure if you are working or not) as they can be a good starting point of mental health support.

The main thing is that what you are experiencing is not uncommon and you are not alone in those feelings. Take care and be kind to yourself.

Djlr profile image
Djlr in reply to Tkat10

One helpful WEBSITE for all types of RA TREATMENT OPTIONS:

hopkinsarthritis.org/arthri...

Jimminey profile image
Jimminey

When I first had RA the anxiety and depression were truly awful.

Edward Bullmore, a physician who treated patients with RA and is also now a psychiatrist, thinks that inflammatory diseases can directly cause anxiety and depression and has written a book called 'The Inflamed Mind' on the matter which I found an excellent read waterstones.com/book/the-in...

I was fortunate in that Sulfasalazine, aswell as working well on the RA, also appeared to clear the A&D with the help of therapy with a psychologist and attending a compassion focused therapy group.

I do feel for you and wish you all the best in your endeavour to settle your mind.

Hi, I was diagnosed in April with RA and it was a complete shock to me especially when I read up about it. I then suffered from anxiety which also turned into depression. I referred myself to MIND and underwent CBT which didn’t help at all. I then was referred to the mental health nurse at the Dr surgery who has referred me to the mental health team I am having a visit on Thursday from them. This all started since my diagnosis I realise I should have sought help sooner. Good Luck Hisue x

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