Your mind : Sometimes I feel that RA affects my mind I... - NRAS

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Your mind

Startrek65
Startrek65

Sometimes I feel that RA affects my mind I get a lot of brain freezes that's how I can describe it my intelligence has gone down this makes me angry and frustrated and inpatient with people and things

Does anyone one experience this

Thank you

Judith

52 Replies
oldestnewest

Yes it happens to me too and is an unfortunate effect of this awful disease. I try not to let myself get upset about it and if I’m with others I try to laugh off my forgetfulness.

Sadly to say it can be the nature of the beast and like Lolabridge I try not to let it get to me as frustrating as it can be. While I don't like what is happening to my body with this awful disease I have had to accept over the last 18 years that is how it is. We just have to be the best we can be and live life as best as we are able to. x

Oh yes often and especially when I have pain, I just can’t process things. I get impatient with people and inanimate objects as I tend to drop or bang into things too🙄 The eclectic mix of RA😐 Happy Boxing Day everyone. 😊

Ruth12345
Ruth12345
in reply to Candy

Me too. Then I get upset that I have been that way

Candy
Candy
in reply to Ruth12345

Yes I’m the same and then spend the rest of the day feeling guilty😩

precious123
precious123
in reply to Candy

Wow yes Candy when I have a lot

Of pain I get nervous. Do you or anyone else feel like this. And when I get nervous I’m done. Can’t think of do anything until I can get myself quiet and calmed down.

Candy
Candy
in reply to precious123

Yes I do and then anxiety kicks in. I think it’s when things become beyond my control because of pain.

Yes it happens to me most days.

But I've got Fibromyalgia as well as Rheumatoid ,so don't know which is causing it really. Unless it's a combination of the both.

Both diseases are hard to cope with. I hate what they're doing to my body.

OH YES YES YES!!!! Since my diagnosis I now realise this is part of the disease before I honestly thought I was going insane, I’m so relieved. It’s not listed on the list of symptoms but many on here suffer. I refuse to stress about it now stress makes me worse. I’m just eccentric now 🤪😜

Gjkas
Gjkas
in reply to J1707

Having both of these diseases do make you feel like you're going insane But you're not. . 😱

Stress makes the pain much worse.

I get all over body pain. Sometimes cramps,sometimes like electric shocks and muscle twitching,also really bad Fatigue. Also get Fibro Fog .I feel like a right Dork sometimes .🤯

You're not eccentric,it's because of the pain, forgetfulness and Fatigue etc that makes you feel like that. All of these symptoms you get with Fibromyalgia. I get very frustrated because I can't do the things I want to do. My hands gets so swollen and painful. 😪

..Ive had bones taken out of both my hands because of the Rheumatoid. Worked good for a few years. but now my thumb have collapsed from where it should be and is laying more in the palm of my hand. So I have to have it wired back into place. Have had Fluid drained from my groin where it's leaked out of my hip...Never mind. We get over it.

It's a case of having to..

Believe me, you're not going insane. Have a word with your G.P because you could have Fibromyalgia as well as RA.

Hope you can have a good BOXING DAY.. 🤞😊 .

rosie1928
rosie1928
in reply to Gjkas

That's right. I have just found out I have both conditions after 27 yrs. Now I know why the methotrexate doesn't address much of my muscle PAIN. I have the brain fog.

Gjkas
Gjkas
in reply to rosie1928

Hi Rosie.

The day after you sent me the message about you having both of the conditions my Husband had to ring 999 because I was in so much pain. Good job he did really,because the pain wasn't all to do with the Fibromyalgia and Rheumatoid.

After several scans they've told me that I have Cysts in the Liver,Cysts in the Kidney,Cyst on the Pancreas and Blocked Bile Duct. I also have Gallstones and a sludgy Gallbladder.

They will be operating on me towards the end of January,when things have died down a bit.

No wonder i was in so much pain.

Hope you feel a little better and you can have a really good and

Happy, Healthy New Year. 😊

Yes, I am not as sharp mentally as I used to be. As with everything with RD when the meds are controlling my situation better, my mental sharpness is better too.

It can be very difficult at times.

as per Lolabridge same as x

often called 'foggy brain'.... try vit B12 hi dose [i use healthspan] and be kind to yourself.... crosswords and card games help too if you enjoy them.. I've also started on mega minerals 1 tab per day as we can be low on trace elements... copper, magnesium etc etc. take care x

Yes, my husband is convinced I have Dementia.

Yes, this is what I thought was happening to me until the meds started working and, unless I have a flare, I am almost back to normal, with the very occasional stumble over words.

Unfortunately studies have shown that RA affects cognitive functions 😟and DMARDs do not help.😢

JFlay
JFlay
in reply to Agoodlife

🙄☹️

It happens to me also. My daughter always said that "mom, how come you respond so much slower these days?" I told her that it is due to RA and the medicine I take then I just laugh about it and that becomes an excuse if I cannot catch up with the young and I forget things and happening around me.

What a relief to know it's not just me its soooooo frustrating when it's happening.

Teedeez
Teedeez
in reply to Tedx

So true but hard to explain to others around us like family and especially coworkers.

Yes me too, had to fill out out a simple form the other day couldn't remember my address embarrassing thank God my husband was around.

I am like that too. I used to have a remarkable memory and could even remember such things as the date we had bought things and used to answer all the questions quickly on quiz shows.

However, now I struggle to remember those things and I know that I often drift off into my own world when reading or watching TV. I am quite likely to say something to which my husband or son responds by saying "But they just explained that on TV, didn't you hear them?" I find I have read several pages of a book and then realise that I haven't taken in what I am reading and have to go and read it over again. It is so frustrating.

Apart from the fatigue, cognitive impairment is my worst symptom. I was terrified that I have Dementia and have been referred to a Neurologist who sent me for an MRI scan and Neuropsychological Assessment. The MRI showed that I have a minor alteration to my brain for which I will continue to be monitored but the issues that I experience were attributed to the RA; the side effects of medication, anxiety and fatigue. I can cope with the pain because I can take medication for that, although I am limited what I can take because I also have Crohn’s Disease. I find the fatigue and cognitive impairment I really struggle to cope with because it is almost impossible to manage and it has such a profound impact on my life. It is also so frustrating that these symptoms are not given the the recognition of the devastating impact that they have by health professionals and the benefits system. I have been turned down for PIP, I am about to be dismissed from my job because of these problems and I am concerned that even if I get ESA I won’t be put in the support group so will be expected to go to interviews. I just wouldn’t be able to cope with this. I have also had depression and anxiety for more than twenty years for which I take the highest dose of an SSRI and now also have to take beta blockers to slow my heart rate. I am starting Imraldi in the new year and hoping that it agrees with me and my Disease is controlled as I have been on various combinations of meds for more than two years without Improvement.

RA is so difficult to live with as an invisible disease with such a myriad of symptoms and impact on our lives.

Sorry for the essay, once I started I couldn’t stop!

Best wishes to all.

J1707
J1707
in reply to Smithycat

Don’t say sorry. I just got Pip ... how far did you go? I went as as far as a tribunal when they suddenly decided just before that I was entitled.. contact DWP tell them your situation has worsened.. reiterate your worst days...are you having more bad than good days?...

Fatigue is my worst symptom it totally disables me. I put this in my Pip . When I have fatigue I don’t work ( reduced my working hours Gp wrote a letter confirming this so did my clinic nurse) and there are days when I’m housebound with it walking is too difficult although I do try a 10 min walk could last 30mins and I won’t drive in these days as I would be a danger on the road .

You’re not on your own with this but worrying makes things worse. Please try again with Pip lots of people have suddenly got it. Put your very worst days as an example and explain how this also effects you mentally.

daisychains58
daisychains58
in reply to J1707

Yes the driving is a real issue when brain fog takes over. I don’t drive then either, concentration is just not there.

Smithycat
Smithycat
in reply to J1707

I applied, had the assessment then got refused . I haven’t taken it any further. I too find driving very tiring and only drive short distances now and also don’t drive in the morning as I am hungover from the drugs that I have to take so that I can sleep. I also have been turned down for ill health retirement. I know that I should appeal this and PIP but at the moment the fatigue means every day is a struggle and I just don’t have any energy left for anything else.

Many thanks for your message. Best wishes

J1707
J1707
in reply to Smithycat

I know it’s demoralising. Try citizens advice bureau they can really help and support you..

Next year will be your year 😁

Pippy25
Pippy25
in reply to Smithycat

Don't give up on getting PIP...appeal. I think it is so sad that we have to virtually bear our souls just to get something we should be entitled to for a cruel disease that they don't understand let alone recognise. I feel like an onion in respect of the DWP who each time strip another layer from me by asking for more and more information each time, when it is clear my health is changing. Keep going Smithycat.

Smithycat
Smithycat
in reply to Pippy25

Thanks for your message. I am hoping that when I start on Imraldi in the new year my energy level will improve and I will have the strength to appeal. Best wishes

Pippy25
Pippy25
in reply to Smithycat

Take care and hope things start to improve for you.

I play "Luminosity" on-line. It keeps track of how I score - so I know when I'm "off" and when I'm good. It's brain games. I really can't afford the cost - $65 US once a year, but I sign up anyway. It makes me feel better when I have a good day!

yES

Hi Judith, I am Bas from the Netherlands. I recognize it. If is due The the medicines or RA I don’t know. But in the morning and afternoon it sometimes look if the world is not real, or when I look in the mirror I think is that me? Sometimes it feels like fog in my brain.

I wish you all the best!

😘from Holland

Bas Euser

J1707
J1707
in reply to BassieHolland

I often feel like I live in a world that just passes me by 🥺

Ruth12345
Ruth12345
in reply to J1707

Me too

Am a relative newbie to RA. Your post made me both thankful and a little happier to know that I wasn't alone in feeling I was going insane. I know all about the MTX fog, my life appears to be 'pea soupers' followed by dense clouds with a couple of days of light seeping through. My husband has always called me Miss Malaprop (he finds it endearing thank goodness) but now it's a case of roll over Shakespeare - my inventions of new words is quite unsurpassed. We laugh over it, but in public I am more self conscious. With those I feel safe with I explain. For me it does appear to affect word selection, spelling and funnily enough remembering the 'time' for appointments etc, even down to writing them incorrectly in the diary. Frustrating as hell but if I know that it is part of the disease it will help reduce the anxiety I have felt around this. So thanks for the post. All the best.

Haha your post made me laugh... you described very well the humorous side of brain fog, especially the new words you are now creating. I too have to write things down and wrongly at times as well. It’s a weird weird world we live I guess we just have to keep our sense of humour else depression would overwhelm us. All the best.

Yes brain fog is very debilitating and hard to explain. At its worst in my case, any business matters I needed to attend to, and which I would normally fly through without a problem was near impossible. I’ve been in tears of frustration because I couldn’t accomplish a simple task or trying to explain something. The brain seems to malfunction. I wonder if it’s stress and fatigue related as well. Just another thing to cope with along with the pain of not really knowing what is wrong with your body but it just hurts everywhere at times like you’ve been run over by a bus. Try not get angry, take that deep breath and count to 10 and try again. All the best, be kind to yourself too. 🤗

Yes I deeply relate to this pain all over your body like you've been hit by a truck or beaten up anger unable to focus heavy body and can't think or focus I hate it because it turns me into something not good the brain ceases no intelligentsia

Judith

I tell people I have lead legs and they look at me rather strangely lol. Brain fog is unheard of unless you have it. I think we have a good case for a proper medical investigative paper to be compiled on this topic.

Just read parts of this article, it's a comprehensive literature review. The discussion section is quite enlightening in terms of research base to date. Worth a read if you can bare it! It certainly highlights that more research needs to be done and that although there is some good work out there, some of the research is flawed, sample size too small etc to make sound conclusions. Makes rather sobering reading.

Cognitive Impairment in Rheumatoid Arthritis: A Systematic Review

Tanya Meade Nicholas Manolios Steven R. Cumming Philip G. Conaghan Patricia Katz

HOW ABOUT IT

After reading all the responses I think we should make a list of everyone’s symptoms of brain fog and fatigue and how it impacts everyday life to the point of being house bound or bed ridden at times. As was pointed out by another, not enough attention is paid to these two widely variable symptoms and how debilitating they are. If we had a clear list to show health professionals maybe it would be easier for them to fully understand this hideous disease.

I agree. An excellent idea. I too feel that this is a neglected area. Admitting to and discussing how this disease /meds affects how our brains are functioning would I think, help us to better understand the phenomenon and potential to develop strategies to overcome it, reduce stress, anxiety and fear around it. I am normally quite vocal in these matters with professionals as I am confident enough to know that this is a symptom and not ME.

I suffered for years from severe endometriosis. The hormone treatment at the time was quite 'savage' and played havoc with my mental well being. Although shouting from the rafters, it was only one GP, after many years, who acknowledged and explained what was happening.(Drug induced menopause, over and over again until it became permanent in my late 30s) Once I knew I wasn't going insane, I started to feel more in control and confident. Drug/ disease impact on mental health is not a new issue for me but the thought of 'here we go again' is not one I relish.

I have been teary in some of my discussions with professionals, some cope, some don't. All give tissues and sympathy but that's not what I'm after. I feel I have a right to be teary, it's a new diagnosis, I'm ruddy fatigued, pissed off and I am grieving. And no, I don't need anti-depressants (yes was offered them and no didn't accept as am normally very even keeled). Phew, that feels better off my chest. I do need, however, a sensible, professional discussion about it.

This forum is excellent but apart from here how do you suggest we could proceed to raise awareness of this issue. Perhaps others on the forum have already found information that they could draw our attention to. So sorry for the essay.

Oh hear hear Rosie 👏👏👏👏 you understand only too well and like me I don’t easily get fobbed off with unacceptable answers to serious questions from professionals.

I have private hospital health cover and live in Australia. I spent 3 weeks in Sydney’s best private hospital last year trying to get a diagnosis having been sick to the point of near delirium, bedridden crying in agony, sleep deprived and unable to walk without crutches for months.

My first and only wonderful rheumatoid specialist God bless him was not listening to me and I remember calling out as he was leaving my room, I WANT TO SEE A IMMUNOLOGIST !!! I would have chased him if I could have lol. I research, I know how I feel and I always look at every option and question everything and expect answers. I succeeded I might add with the immunologist and I was correct with my diagnosis.

A Cytokine Storm hit my body caused by a very toxic anti viral treatment followed by a PRP injection in my ankle. (Stem cells)

I like you did not need anti depressants/anxiety pills or lyrica for nerve pain. I needed major pain relief and answers.

I had complained to my GP for 2 yrs like you saying I’m sick, somethings wrong, etc etc. they all seem too busy to really listen and spend the time to listen and then work out a treatment plan or tests.

How do we as a group compile a list .... write our own symptoms on those 2 issues, brain fog and chronic fatigue and how it impacts our life.

I’m not sure if we can pm each other on this group but either way we could start a topic and ask the question and get responses in point form.

I could then read thru or we could and bingo, a list we have.

Doesn’t sound too difficult and I feel it would be invaluable to keep with our own personal health papers to show whoever for whatever reason.

Sorry if I’m rambling ... it would be a useful document to have. It could even be detailed to show most prevalent to least etc. There possibly is already a list Rosie but I somehow doubt there is a detailed one if at all.

Thankyou for replying too, I’m sure there are many who are in the same perplexing boat trying to just feel well.

J1707
J1707
in reply to RosieA

Anti depressants seem to pressed upon us. Before I was diagnosed I repeatedly went to my Gp with extreme tiredness I just couldn’t get through to her she just kept saying your depressed saying she wanted me to take antidepressants. No no no. I kept saying I’m not depressed. Why don’t you exercise was her response.. I love exercise and walking but I’m fatigued I can’t . I would exercise for 20 mins and then be comatosed all day.. her reply you depressed. AHHHHHHHHH!!!!’ 🤬🤯being diagnosed was a double edged sword a sense of relief ( I’m not insane and I’m not a hypochondriac) and grief that this disease effects not only my future but my family’s.

RosieA
RosieA
in reply to J1707

rheumatoidarthritis.net/liv... Quite an interesting article. Suggesting biochemical impact on cognitive functioning. Might be worth a read. I shall endeavour to find out more.

RosieA
RosieA
in reply to RosieA

Sorry if you have already read it. Grandmother, eggs and all that stuff. Especially as I am a newbie

J1707
J1707
in reply to RosieA

My Gp should read this

Very interesting read. Just shows that GP’s being the first port of call need to educated on these symptoms in diagnosing the growing. Umber of auto immune disorders. Thanks for sharing.

Notice the comment re opioids for pain which is better than suffering. I concur 100% with that comment. Uncontrolled Chronic pain makes life totally miserable.

Lots of good articles, eg “The Sacred Plant”, Leafly has good info, and “Autoimmune Secrets” is excellent, researched and presented by medical professionals, all on the benefits of taking medicinal cannabis oil particularly for depression, anxiety, inflammation, sleep and pain. That’s the path im currently taking, can only see how it goes long term but short term there are many benefits.

Knowledge is power with these diseases.

daisychains58
daisychains58
in reply to J1707

Same here, it seems to be a common thread with ongoing fatigue not being addressed by GPs

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