Invisible anxiety

[Magymay]

As you all well know anxiety and the feeling of being anxious comes with PSA and RA .I often mention this to my doctor and it gets totally ignored ,I don't get this as it can be so bad at times .I was asked at assessments if I had anxiety problems and said yes but doctors have dismissed this but how can they when it's a symptom ,anyone else feel this is an issue 😖

[Hidden]

Yes it's a big issue. I suffer with cracking depression myself. I think anyone with a life long nasty illness is going to feel either depressed, anxious or both! Not only that, I think inflammation itself can cause mood disorders. I know myself, when the disease is active, my mood is awful.

Certain medications can also cause problems with mood. Both Sulfasalazine and methotrexate have cause awful depression for me.

Doctors do tend to ignore these symptoms. I have refused to take methotrexate because death was beginning to feel like an acceptable option! I think sometimes you have to be politely forceful in expressing how one feels to doctors.

[Hisue in reply to Hidden]

Yes, I have severe anxiety, With RF almost 3,000, sudden onset I am in fight flight freeze mode 24/7. I pace with distress. Need Valium but dr will not prescribe so take lorazepam, Yes, the TA drugs make it worse- especially prednisone.

[Hidden]

Hi. Its not great when your concerns are brushed over.and you wonder if you are accidentally wearing your invisibility cloak! I guess there are some symptoms with straight forward possible solutions, but its harder to prescribe for anxiety. Most Doctors would only suggest Anti depressants or CBT, if anything. You could google Mindfulness as i reckon learning to be in the moment and breathe certainly helps. Many people buy the books, but sometimes they prescribe lengthy 'meditations' that are more suitable for those who like meditating generally.. Try focussing on what you are doing at any one time, just for a few moments. Gently bringing your mind back to the task as it wanders off. Very restful. All the best.

[oldtimer]

The medical team tend to ignore anything that they feel unable to deal with! That makes us feel as if it is not worth bothering with or that we have something imaginary. I wish they would just say something like 'That's very common, I wish I knew how to help you.' or something just to acknowledge the problem.

[Hidden in reply to oldtimer]

Absolutely!!!

[Nuttyshirlz]

Yes

I’m same and often get ignored. Lost count how many times I’ve said something for it to go on deaf ears even sending email to help team. Don’t always get a reply from them. Would be nice for them to say have taking note of what u said or something I’m not asking for much inside of feeling like invisible 🙂

[Hidden in reply to Nuttyshirlz]

My rheumatology nurse emails me every third day to see how I am doing

[PFKAAde]

Hi Magymay

It seems to be a common theme as I’ve lost count of the number of times I’ve mentioned that I am struggling to a GP or even my (otherwise excellent) Rheumatologist setup.

When I was relatively recently diagnosed I was referred to a CPN who discharged me after 2 sessions and said ‘you don’t want to go down this path because of the stigma attached to mental health’. Admittedly this was 15 years ago, but still.

More recently and following other (life-changing) health issues I renewed my request for help. The GP gave me a piece of paper with some phone numbers on it. The rheumatology team said that they don’t have any direct access to psychiatric care, but that I should try self-referring to another local charity. I did and waited about 6 months for an appointment. I have now had 3 sessions with a therapist, so basic talking therapy. Is it helping? Too early to say and too much going on in my life for it to be a quick fix, but it still makes me wonder how bad you have to be before you get referred to a specialist mental health practitioner, like a psychiatrist. I suspect they think that if they referred everyone with RA that complained of anxiety they would be snowed under, but it’s very frustrating to read everywhere that if you are struggling don’t suffer in silence etc because even when you outright ask for help you still have to fight to actually access even basic care.

Unless you want to go on antidepressants of course, in which case here’s your script...

🙏🏻

[Hisue in reply to PFKAAde]

Same experience as you- Rheum doesn’t do mental health, psych just writes scripts, counselor doesn’t “get it”: RA.....

[sunnydown]

Anxiety and depression has been a major problem for me since I was diagnosed with RA (Last November). The amount of pills I am taking doesn't help matters.

One of my friends suggested I should take CBD oil drops daily. I've been doing this for the last 3 months - and only now I am beginning to feel better. Had no panic/anxiety attacks for the last 2 weeks...and I was getting them daily. It does take a while for CBD to work, so be patient and take the drops (under the tongue) daily. I would recommend trying this.

[scotslass333 in reply to sunnydown]

I've just decided to give CBD a proper try, you read so much about them being helpful for anxiety. Are they ok with medication, do you know? Scared to ask my GP!! 😬

[sunnydown in reply to scotslass333]

I currently take

•Lansoprazole 30mg (twice a day)

•Naproxen 500mg (daily)

•Methotrexate 15mg>17.5mg>20mg (one a week)

•Hydroxychloroquine 200mg (twice a day)

In the mornings I also drop 2-3 drops of CBD (Sativa) under my tongue. I've been doing this for 3 months and had no complications. Bear in mind it doesn't work for everyone and it takes around 2-3 months for CBD to kick in.

[scotslass333 in reply to sunnydown]

Thanks sunnydown, that's great.😃

[Ali_H]

How bad do you need to be to see a trained mental health practitioner? Pretty darn bad if you ask me. My depression was diagnosed in 2007 - lived with it since a teenager for sure. My RA was diagnosed September 2014 and I asked and referred to a mental health psychiatry dept as I felt my RA diagnosis might trigger my depression into full swing again - I got an appointment 6 months away and after a five month wait plus a further diagnosis of blepharospasm (apparently not RA related) I got a letter postponing my appointment for a further month- I told them there is only one thing worse and more dangerous for a woman than waiting alone into the night for a bus and that is waiting alone in the night for a bus that isn’t even going to leave the depot and I was better off walking home on my own if they couldn’t reinstate my appointment within the week it was meant to be in - they discharged me!

Luckily my GP secretary is a clued up cookie and she got his permission to get in touch with the local Let’s Talk service and they have been great with their support ever since (prior my GP practice had their own mental health nurse who I saw for 18 months monthly when diagnosed with my depression but that service was discontinued so wasn’t available when I was diagnosed with my RA.).

If you have a Let’s Talk service available in your area they do actually have a ‘self referal’ Process - it exists in Notts and Leicestershire but I am not sure where else.

All the best

Ali

[Magymay]

Thanks all you amazing people ,I'm just so down with it all and the assessment system has excellarate my low mood and I now find if I have to venture out for anything I take panick attacks which i absolutely hate .Do you have to have a breakdown first before they take any notice ?,shouldn't come to that ,always tell us if your feeling down they say and when you do they put you off as though your exaggerating,can't win 😟try to stay upbeat people ,we have each other to lean on ,thank guys 😘

[Damaged in reply to Magymay]

I must admit I am not a fan of psychotropic drugs. May I recommend you register for tai chi . I do not go to classes as I minimize my exposure to others. I also purchased a small meditation book. It is amazing how learning to breath properly can be an effective remedy.

I did years of opiates, pain clinics, physio, acupuncture Ext... biofeedback training helped me to go from a ten to a two in anxiety almost instantaneously. Each person must find what works for them. If talking helps you reach out to local support groups. They understand what you are dealing with, a shrink does not. Just food for thought 🙊

[Ali_H]

Nope not into psychotropic meds either.... and they add another strain in the liver but sometimes needs must to stabilise things.

Things that help me... walking barefoot in the garden, gardening, relaxing bath, mieditation, my loved ones, walking in the fields ( no good if panic attacks an issue obviously), yoga class - (alas no tai chi class near me as love this), writing poetry, a massage, having an occasional flaming good moan with someone who won’t try to fix me or needs everything to be OK. Wrapping up in my sleeping bag on a crisp winter day and reading in the garden sun, fen shui-ing away those things I haven’t used for heavens knows how long - and not buying more clutter to replace the old nonsense! Using the outdoor gym in the local park, the odd ice-cream afetwards.

😎

[Hisue in reply to Ali_H]

You sound so terrific & artistic!

[Hidden]

Magy, so sorry you re feeling low and you re right - it's regularly sidelined/ignored by medical professionals. Constant coping with assessments for pip, esa, ill health whatever also don't help when you ve just been diagnosed with a chronic disease, are in pain & have meds side effects and fatigue: we must be strong people because i don't think i ve had a more stressful year.

I had anxiety badly at start, couldn't sleep even tho v tired. My GPs are helpful &referred me to talking changes ( cbt 8 week group sessions for long term conditions) when prescribed sleeping tablets. I came off hydroxychloroquine too as kept me awake, made me feel sick all week.

Some of it was v good and I just used what worked for me. I Use lots of little short exercises in dr matt lewis book too because he's v into not denying they happen but accepting they do and what was worse for me was trying to stop them & panicking more if that makes sense. Did mindfulness meditation too but this is a bit longer like someone else said.

Anyway hope your GPs has something near you like that. They ask permission to contact your rheumatology afterwards (holistic treatment)& i nearly said don't bother they re only interested in physical side but why not?

I am really pleased nras are focusing on mental/emotional effects of disease this year, a real issue for many of us. Hope you get the help you need/find something that works for you. Sorry for essay/repetition: I ve posted/replied on it before but can't find it x

[scotslass333]

Hi Magymay, yes anxiety and depression is a big issue that bothers lots of us, the whole thing is linked in my opinion. Did anyone hear the item on Jeremy Vine's show earlier this week, radio 2? About how inflammation may be a major cause of depression. I'm going to try CBD oil again, I gave up the first time! It does seem to work for a lot of people.

[Hisue in reply to scotslass333]

Yes. Have read inflammation can cause depression & anxiety.

[AV57]

I totally empathise, was same for me until I moved house and GP a few years ago. Then all changed. Recently, I have changed my diet and it's helped my mental wellness such a lot. I joined dietdoctor.com and follow a no sugar, high fat, very low carb diet. My anxiety and the depression has improved, along with ability to process thoughts. It's called a keto diet. Hope you feel better today. It really is just a case of getting through the day moment by moment sometimes. As for the GP, may I suggest you go in with the express purpose of seeking advice on tackling your anxiety only, rather than as an aside. Be brave, tackle your issue head on.