I just need to ask as I think I'm going mad... I have been diagnosed with UCTD and secondary Fybromyalgia and struggle with what I call 'mood swings'. I am 62 years old, and keep hearing myself say, its now or never and that I'm going to make the most of the next 20years - then do nothing! Take today, its beautiful outside and I'm not working (I still work full time), I coukd go fir a walk, go shopping, do the garden or all of the above, but no, I'm laid on my bed feeling totally overwhelmed. Sometimes I go days feeling like this and go to bed totally depressed, then the next day repeat the whole scenario! I feel like I'm letting life pass by but can't find the energy to do anything about it! My partner will come home and ask what I've done, then run the mantra of 'well, you've got to make an effort, you'll feel better if you do' and I'll feel like murdering him. Is it me being lazy, or can anyone else relate? 🤔
Mood swings: I just need to ask as I think I'm... - LUPUS UK
Mood swings
No you’re definitely not mad and you’re not lazy! I think it’s the lack of energy that goes along with these conditions (I have lupus). I often feel that I have to force myself to do anything so I have to live with using will power rather than innate energy. And that’s tough!
I guess some of it is depression as well, because you realise that you can’t do the things that you want to do or the things that your friends can do and that’s quite dispiriting. It might be worth a chat with your GP if that’s getting on top of you.
You can try all the usual advice e.g. healthy eating, gentle exercise when you can and if you have a big day, timetable a rest day afterwards. Every time you do a household job have a sit down afterwards.
‘Let whatever you’ve done today be enough’
I've decided to stop fighting it... had a busy week this last week, because I felt really well I packed loads in - went to work, met friends, went on shopping expeditions, spent 4 hours jet washing the drive, spent time with my sister sorting my mums estate out (she passed away recently) and painted garden furniture. I felt like my old self for the first time in a couple of years! Then this morning, bang...
YEP-
When we have GOOD DAYS, we tend to really USE that ENERGY & then we PAY FOR IT 🥴🙃
We have to decide if the ACTIVITY, Etc is worth risking a POSSIBLE (most likely) a good FLARE. RESTING before big extraneous Events will help us get through & RESTING a day or 2 afterwards can reduce the FLARES.
When I was younger- I wondered why EVERY WEEKEND I had to REALLY “REST” to have a STRONG week at WORK. If I skipped a WEEKEND, I felt like a TRUCK had HIT me. 🙄
Sun was not a STRESSOR YET, but mid 40’s I got hit hard w/SUN attacking not only SKIN, but JOINTS, migraines, CHEST breathing issues, etc.
We are always LEARNING NEW “TRIGGERS” to our AUTOIMMUNE DISEASES- staying PROACTIVE keeps us on top of our GOOD & BAD DAYS by understanding what affects us 💜
you are not mad,yes I can relate to how you feel.
I have several diagnoses,one is UCTD.
you need to break things down into smaller tasks to avoid feeling even worse
Have been to Drs for blood test.
We’ve come back,have done veg for tea,
Now having a cup of tea and a chocolate bar.
Next plan is to put washing out,feed birds,clean. Bathroom floor .some of this won’t get done,but no problem.
If you think you are depressed,have you spoken to GP.
When I got my diagnosis my head was everywhere.the GP suggested Cognitive Behaviour Theraphy.
It doesn’t change anything about your situation or health,but hopefully helps you change your way of thinking to help you cope.
In our area you self refer-I got details from GP.
Some rings you,quick phone assessment,then they tell you if you meet the criteria.
The first was pre- Covid,had the choice of phone appointment or face to face.
I chose phone it worked well for me.
I did 2 courses of this,I felt the first one was more helpful,but I had of issues then.
The 2nd ,wasn’t as helpful,but perhaps I felt this way because she kept trying to give me an 8.30 am appointment .due to my lung disease I’m not good in the morning.
Dontgoogle,the NHS website is more reliable.
You don’t say whether you’re on any medication.
As we’re retired,my husband attends hospital appointments with me,so he knows what is said.it’s hard for him.
I hope you can work your way through this and hopefully feel a bit better.
Thanks for replying, yes on Hydroxychloroquine, Fluoxitine, amyitriptyline and lanzoprozole. Not been able to see my consultant since last April due to back log of appointments, but think I need to see him. My doctor is useless, not seen them for 3 years, but the surgery nurse is very good. I did think I had a little depression, but just tried to ride it out. If thus mood persists I'll need to deal with it, it makes for a miserable existence
YOU need a GREAT Rheumatologist-
I would get a NEW Dr that “took time” to explain meds & what to expect & other options if these DO NOT WORK, how to manage day to day energy levels, would acupuncture help, massages to help BLOOD FLOW in Muscles, ETC.
I think it would help you to try to deal with your depression,then perhaps things will improve.
My consultant has been good,he keeps trying to see face to face ,it keeps being changed to phone appointments.
I don’t mind the phone appointments,it saves us driving up and down.
I would however like a joint appointment with rheumatology/ Interstitial lung Disease consultants,they are rare,but I keep trying.
I get support from the ILD nurses,they are very helpful.
The specialist ILD pharmacist is really helpful and gets back to me quickly.
The GP struggle with me as I am way out of their area of expertise,but are helpful.
My energy levels are a joke,no energy at all.
You have to allow yourself time and acknowledge that you’re I’ll,be kind to yourself.if you’ve got outside space sit out with a drink,fresh air is good for you.
Take care x
You’re not alone. I have UCTD am certain that it impacts on my mental health. When my body feels lighter with less pain on some of those rare occasions I feel mentally lighter, hopeful and positive. You haven’t brought Uctd or depression on yourself, it is not about making effort. From your post I gather that you are already doing a lot. Please be gentle with yourself take each day as it comes. I find mindfulness helpful in managing my mood. Sending you love xx
feel you and relate. Be kind to yourself 🤗
Hello MCTD - you are definitely not mad and not lazy. I have very often been in a similar situation of thinking I need to make the most of a beautiful day (and my life!!) and then really struggled to make it out the door - or like you, not made it our of the door at all. Your husband is right though - doing something, no matter how small, makes you feel better. A very short walk somewhere flat. A few slow lengths of the pool (even ONE!) A walk round the local supermarket and a quick chat with the checkout person (one my worst days, this is a small thing that really helps). Even sitting on a bench in the park watching the world go by has to be better than being at home on your own all day talking to no one.
I don't think it is just 'mental health' - physical ill health can bring you mentally low and vice versa. The two things seem to work in tandem - like a sort of tag team, to bring you down. In fact - I am fairly sure there is evidence that brain inflammation is a thing in autoimmune diseases that cause generalised inflammation (don't quote me on that - but someone on this forum will know).
So on the days when you manage to get out the door it is a double win and you can be super pleased with yourself! Cut yourself a little slack - but only a little. Plan the tiniest excursion - it will give either mind or body a little boost, and if you are lucky, maybe both. Good luck.
Our hearts go out to you ....💜
Most of us with LUPUS have the EXTREME FATIGUE that “you cannot fight”, since your BODY is in a FLARE. It’s telling you that you need to REST (like when you have the FLU or COVID- you “REST until you are stronger”).
We all learn what our TRIGGERS are that cause our Body to FLARE.
It can be STRESS , doing “too much” w/out scheduling REST times, ILLNESS, “SUN” , etc for our LUPUS and your UCTD is very SIMILAR. If you do not REST - it can get much worse.
Creating BALANCE between “activity & REST” to get into a new “RHYTHM in life” helps you survive & enjoy your life.
RESTING for several DAYS (or week)helps gets it under control, then you can start to WATCH what the TRIGGERS are that make your SYMPTOMS WORSE.
Also- with a CHRONIC ILLNESS- PLAN REST times each day- dont PUSH beyond what your body says you can do.
This will help with the “depression” by accepting the DIAGNOSIS, working w/Dr by keeping them in the “know” as to how you are doing. They may ‘change your MEDS’ if your aren’t having any GOOD DAYS.
Tell FAMILY to “BACK OFF” - when you REST, “you” are taking care of your BODY.
Plan REST TIMES or couple of Days before big EVENTS, travel, celebrations, work, etc so your BODY IS STRONGER & PREPARED- it’s part of your “MEDICINE” that you can do “naturally” since .......... YOUR BODY is ATTACKING ITSELF. Expect to possibly be DOWN after long stretches of activity/ work & plan rest times (if needed).
Give yourself compassion, warm baths w/Epsom Salts, Massages, & take meds as advised- you WILL have GOOD DAYS 💜
We all learn to LIVE a NEW NORMAL 😊
verywellhealth.com/mixed-co...
ALSO - FIBROMYALGIA does have more MOOD SWINGS associated with it along w/EXTREME “FATIGUE”.
With BOTH diagnosis, I would consult RHEUMATOLOGIST as to their RECOMMENDATIONS to see what they think can ADD to your ENERGY LEVELS & what DAILY CARE you could ADD to address these SYMPTOMS.
These AUTOIMMUNE DISEASES can affect the CENTRAL “NERVOUS” SYSTEM- crossing the BRAIN BARRIER.
“READ Articles” from REPUTABLE Medical institutions to keep current on MEDS & their results w/your Autoimmune issues, new TREATMENTS & RESEARCH, ADVICE on LIVING w/autoimmune disease, etc.
Below is a good SITE on FIBROMYALGIA for you to “REVIEW” carefully & SHARE w/FAMILY 😊
healthline.com/health/fibro...
I'm so glad that so many people have responded to my post. I felt bad after I had posted my thoughts, but just needed to say it out loud... It is so helpful to know that people understand, thank you for your reply, I'll take a look at the site you have suggested. J
We are all here to “share our experiences”, it’s very hard learning the “ins & outs” of what to expect, what’s normal for “us” and what is something that we should immediately bring to the attention of our Doctors.
Like having a BABY - we leave the Office with no Real Instructions of Guidance in this NEW WORLD into which we now live.
So - WE SHARE 💜💜 what has worked for us to help others.
But since we are ALL DIFFERENT, our Autoimmune Diseases tend to find the weakest areas of our body to attack.
Each day find SOMETHING to be THANKFUL for in your life - big or small 🙏💜😊
Everybody has ups and downs maybe you should try doing something for have an hour a day and see how that works for you.🤞👍
Problems
Please help me :o( .... is this Fibromyligia ????
No support
Don't think my thermostat is working!!!
What's wrong with me?!
