It's been a struggle for 14 months coping with RA and the aftermath of the diagnosis, the consequential side effects of many types of medication and keeping a healthy mental health. I have ultimately and naturally gone through the route of a natural progression into concentrating on on my own vision and focus of getting well again. It's a strange dilema I have become desensitized towards my journey on a biochemical level, not really considering the impact its had on my mental health! I have finally got to a stage that I have found a biologic that is really working in treating my RA, however I feel excausted mentally! I actually feel (after 14 months of sheer helll) really positive and well! But I feel my mental health has taken a huge battering. I've been struggling recently feeling numb inwardly towards how I am feeling. It seems to me that I've coped mentally on every level to regain strength to proceed forward on ever level, when medications were not working. Now they are, I'm at a loss as to why I'm left feeling bereft mentally. After much though I've realized that it should be to no surprise I feel the way I do. RA is not just a physical traumatic journey it's also a mentally challenging journey too. Take care xx
Biochemical versus mental health: It's been a struggle... - NRAS
Biochemical versus mental health
Your not on your own.
Know exactly where your coming from.
Totally consumes you mentally with your quest to get back some kind of normality. I also miss spontaneity . Hate thinking if i do this or that then there will be consequences so need a rest day after. Exhausting mentally
Totally agree! I never had to think of the consequences of planning in advance and the aftermath of what might be. I hate the fact that planning ahead could be such a huge task in terms of 'how am I going to feel on the day'? Its just excausting and you do feel that you let other people down and those very close to you too. I totally understand that ones health comes first and if those around you don't understand well, it's their loss! But it must be difficult for others too. Yea very tiring!
Totally agree - with your last sentence especially. x
When you start your personal journey into the world of Living with RA it can be a daunting one, it brings much fear, and vulnerability as you step into an unknown terriortory. You grapple every day with the many paths of medication, where your mental health is tested in every direction. Finally my path seems to be getting brighter.
on wards and upwards 😁😁🙏👏
It is mentally challenging and I think people don’t often realise that. I didn’t and ended up in a right old black hole. I did go for CBT last year and the psychologist said it’s probably a touch of PTSD as I’d not accepted the diagnosis and was determined life wouldn’t change, even though it had, and I hadn’t accepted it had.
Now I’m happier with life again and don’t go to every event that I did pre diagnosis. My issue was I was trying to do the same and cancelling at the last minute and consequently feeling worse. Downward spiral led me to taking three months out of my business. I didn’t go out the door for 8 weeks. It’s not like me and it was awful.
Good thing is that with help, if you choose to take it, things do improve and you will find it easier to cope. As someone once said to me, the sun is shining, even if it’s behind the clouds at the minute ☀️🌦
Yes agreed. It really is about acceptance, and the reality is it does take time. At the beginning you dont think life will be the same again, and in some ways it never will, but a healthy mindset is paramount to move forward in loving life again.
Someone said to me I was a cup is always full type which was true. I still feel the cup is full but in a more balanced way it is definitely not running over but I have love and laughter in my life. My mindset can be wobbly lately but I call it my reality check days we can’t do it all but I now shift from 6 to 5th gear so I can be stable rather than rushed.
Well it's not just living with RA and the projected consequences of the condition, there are other perpetual challenges in life aside of this. It's so easy to take life for granted, I was guilty of that! But lessons are certainly learnt and positivity takes on a completly new meaning. It certainly makes you stronger. I just accept now that there are days I dont feel great and the sun isn't shining but I know and look forward to when the light is.
Hello again Jaxine. So very true you cannot separate mind and body. You cannot separate biochemical processes from your brain or the effects of RA meds or the psychological effects of RA. I feel you sort of need to integrate a new me. You have to decide what you need to give up and what new to create that makes life worth while again. just some thoughts. Take care, Simba
Yes for sure. When I wrote my dissertation ( long time ago) I wrote it on the projected consequences of people suffering from debilitating mental health problems whilst taking powerful anti-psychotic drugs. Did it either hinder on enhance their quality of life? My research indicated that on every level medication effected a person s quality of life. Of course at the time I had no understanding of the debilitating effects this had on people lives but I do now! Living with any chronic illness can be traumatic enough without the unwanted side effects of the meds. The different types of my medication for RA which causes chronic fatigue, chronic migraines, lower abdominal pain, dizziness, dry mouth, brain fog, UTI s cones also with it's own set of challenges. I thank God I had a healthy mindset from the beginning as I've relied on this throughout. But yes seeking equilibrium and positive life choices on how to successfully live ones life is paramount .
What an interesting subject for your dissertation. I have also done research on the biochemical effects of meds on our brain function. More for the future , I believ🤓👍
Funny isn’t it. You do a lot of research and you think you know what it is all about but you really don’t know before you lived it through yourself. This is true in all hard things in life.😳
Yes exackly, all of my research was based on theoretical knowledge and an empathetic understanding of ones life experiences but literally no understanding on how living with a chronic health condition can impact on ones mental health. If I had had the life experience then,that I do now, I feel my research would have conveyed a different level of understanding.
I think you are so right. The different hardships in life have brought me along side theory have brought me different levels of emphaty. After 5 years I am looking even deeper to the metabolic biochemical level, and have started looking at RA in a different ways, I’m not looking at the immune system as attacking my body but trying to fix something that is broken.My new target is to find things to help to strengthen the immune system not making it weaker, through learning about human metabolism deficiencies and my own.And have found that it’s really has been helping my RA and without toxic meds.Seems too good to be true!😲
Wow! Sounds like a break through for you. I agree with finding ways to strengthen an already suppressed immune system! I have hated taking toxic medication, however having persevered for 14 months, I feel at present, I am now reaping the rewards and embracing it. When I'm not on meds my RA is undoubtedly vicious! My hope in the future (with medical guidence) would be to ultimately go into remission, but I'm not holding my breath! I'm grateful that huge strides in medical intervention and science has progressed enormously in years and I've eventually found a Biologuc that seems to like me! Good luck on your quest.
Thank you. Cannot get out of my mind that there is nothing more fantastic than the human immune system and the work it is doing to take care of all the dangers it is confronted with as well as all the intruders that it takes care of.Human medical practice has never as of yet lived up to this.
Totally agree! I dont think I ever thought of my immune system and how it works 24/7 to keep me healthy, I totally took it for granted 'why wouldn't I'I was living a normal healthy life in total ignorance that it might break down! I'm not sure had I changed my life course transition (in terms of being more vigilant) that I may have saved my immune system from breaking down. I will never know!
And the meds may have confused it all together?!Seems to me the the immune system is doing its best to work around the meds as the meds try to kill symptoms causing new symptoms and side effects. Who knows?!
And so it should be confused! It's the immune system s fault for breaking down in the first place! 😂😂 sort it out!
I do certainly not think it’s the immune system’s Fault Its it’s doing its best to save the the body.
We are all of us born with a body and an immune system which unfortunately has its weaknesses that are affected by differences in how we live our lives. We know that that our immune systems are confronted with a growing number challenges in our modern culture.These new challenges are in fact quite well diagnosed in different sciences. We also know a lot more about RA and what is happening in our bodies when the normal immune system is not working and what it is resulting in. like a metabolic dysfunction, mithochondrial dysfunction resulting in lowered energy production that in turn by humoral dysfunction and so on in other words everything is connected. I believe had I known all I known today I would have been in a much better place today. And believe this is what future medicine will be about,preventive👍I just hope I haven’t jumped on the bandwagon way too late.🤓
I understand that the immune system is paramount for our physical health. There are many reason why it breaks down and causes chronic illness. And when you think how hard it has to work to combat infection etc it's to no surprise that it can get confused , break down and starts attacking the it's own armour! It does however cause huge anxiety when we are told that had we avoided too much stress, anxiety, sedentary, poor diet and so forth we could have avoided developing a chronic condition. When first diagnosed I naturally searched for reasons why I developed RA given my good health and to the contrary of not looking after myself. It's a question that can't be answered only suggestions that 'could be' in my case my father had Chrones so genetics plays a part 'maybe', and the death of my father 2 months prior to diagnosis. Both of which cannot be avoided. I'm really not sure in, most cases, that developing a chronic condition could be avoided .
It has been shown that probably genetics only plays 1/3 of the role..Different stresses of life play a bigger part. For me it was thyroid deficiencies resulting in humoral dysfunction and energy reduction in mitochondrial functionining . Constant hypothyroidism caused estrogen/progesterone dominance since childhood gave symptoms of endometriosis,miscarriages, low body temperature.hard to regulate temp.These can be fixed and supported without toxic meds in good time and it seems like supporting our normal immune system.(?)
Hi Jaxine. I think we were diagnosed around the same time as I think you started MTX when I did (I'm still on it, still struggling!). I too went through a bad time last year accepting the diagnosis, the treatment and my inability to do things I did previously. I had counselling which did help. But then I had a bad flare in the middle of December which I'm still dealing with and that plunged me right back down. So I know what you mean, you really have to fight to restore and keep your mental health on top of all the physical challenges.
Hi there, I had a big flare up in December too! Last year was such a huge struggle, I initially started off my journey full of hope, vision and focus but as time went on with each unsuccessful Dmard and Biologic working its magic, my mental health took a battering. Each time, during the course of last year, as soon I seemed to recover from one infection, or a flare up I was punched in the face with another! I pulled on all of my resources to endure the battle, however I was exhausted and bitter towards RA. But as I conveyed on the start of my journey ' I will not be defeated' I throw anxiety out of the window and face my challenges each day, of course it comes back knocking, sometimes harder than before, but fight we must!
I'm now on Biologic which seems to be working for that I'm grateful. Dmards didnt work for me, side effects were debilitating. Hope your struggle ends soon.
Last year was a year from hell for me too. one long continual flare chasing appointments lost my dream job now work reduced hours.Allergic reactions during particular large flares ( epi pen now) and DMARDs also caused allergic reactions where I needed A& E care. On week 3 of a Biologic hope this works as well for me as it has for you.
Hi, sounds horrible for you. I've been taking Humiri once ever two weeks, 5 injections so far. Initially I did suffer side effects, nausea, UTI s, migraines, tiredness etc but it seems side effects are decreasing which is great! I still have joint pain in my wrist and thumb however, I can cope with that. Good luck though, I really hope you find your way too.
Two weeks ago, i couldn’t stop crying and my husband commented on the fact that i’d Lost my appetite, my interest in most everything and just wanted to stay in bed. Whether I was in pain or not. I went to see my psychiatrist and he diagnosed me with depressions (first time ever and I’m 63) and started me on a mild antidepressant. Even though i wasn’t happy about another medication, it made a huge difference, almost immediately! I felt like I got my energy, sense of humor and appetite back. I’d just assumed all the symptoms were part of RA and not something else. Apparently, depression tends to come with autoimmune disease. Hope you are feeling better!
I totally understand everything you have said, I've been there believe me! Such raw, true feelings, I myself, was in the same predicament I couldn't understand that my low mood had become so morose! I wasnt even in pain however, I felt at a loss with my own emotions. I actually would have preferred to have have felt pain because at least I was feeling something! I was overthinking everything! I'm so glad you have your mojo back, it makes me happy that you've started to embrace your life again. I have too and it feels good doesnt it Sparowtracks? Thank you for sharing your personal al journey x
Hello Jaxine
Indeed RA not only destroy one’s body but it affects one’s mind for the long term.
Having to cope with such pain for so long plus all the deformities (swollen deformed fingers, swollen ankles, knees, elbows etc.) and feeling so incapacitated is soul destroying.
I have had RA since my late 30s, back in the late 1980. Am now 73. It’s been a long difficult journey.
Enbrel was the best biological treatment i had. Gave me my life back (well nearly) for over 17 years.
Then I had 2 full knee replacements (2017 and 2018) and enbrel stopped working. Was put on rituximab infusion but that didn’t control my RA. So now am on JAK inhibitor bariticinib , it has helped but my RA is still not fully controlled. It’s a huge worry because this is my 4th biological.
I cannot tolerate methotrexate, had the tablet and injection forms. It made me feel like my body was poisoned, could not digest food anymore difficult to eat.
Unfortunately they seem to push methotrexate with nearly every biological.
What biologic are you on?
Hope it carries on working for you.
Best wishes.
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