Hi all,
I was wondering if anyone else also has an autoimmune disease?
I have recently been dx with fibromyalgia and possibly Sjogrens syndrome (have had symptoms for 5 years) and I am finding the fatigue, muscle/joint pains and brain fog really hard to cope with.
I still work but not sure how much longer I can carry on with that really.
If so, I would be really grateful for any ideas with dealing with the horrible symptoms.
XX
Hi I’ve got rhumatoid arthritis with the mouth prob was dx at prim was on steroids inj but then they found out I had sec to lungs so stopped the tabs I was gona have until I fin all treatment i don’t get any pains at moe as chemo seems to stop them I’m unsure what will happened when fin chemo what stage are u at I can understand how u feel with all the pains it used to get me down tc Laura
I am in a similar situation.
Lived with it for years quite unsuccessfully as the pacing strategy is difficult to operate whilst working full time!
Eventually crashed with depression and lost my professional position.
Since BC it has definitely been far worse…
The fatigue and pain is very difficult to manage. I find the summer months a lot easier as I’ve lost my temperature control and am always cold. Achieve so little when I’m cold.
(My energy bills are enormous!)
In warmth I achieve more… but do often feel I’m losing control of my home/garden which is very depressing in itself.
I try and continue with the pacing model - varying results!
At present it is very severe so I have to put food preparation as the focus of my day! Have learnt the hard way not to neglect mealtimes.
Try and eat healthily and prepare foods during the best time of the day for you. This is how I try and live but I find routines difficult! Energy is very limited so social activities have really dropped away. Not sure this is a good thing…
It is a very difficult way of living but if you can accept a new style of living it can improve your wellbeing somewhat but your old life is a distant memory!
This is so difficult to accept in the early days.
I’ve had a difficult summer and this week I’ve had some household problems, TV broken, Internet crash, flooded the kitchen and although not world shattering they have reduced me to a slobbering mass!
I think you can adapt to a simpler life if you’re older but it is at great cost and when life goes wrong the sh*t really does hit the fan!
I live alone so hope you have some good support networks.
I pay for a cleaner and gardener at times which is a great aide.
Do hope you cope with this new lifestyle.
Love and hugs to anyone living with this type of dx, especially those above.
Welshgirl xx
I didn’t really mention the brain confusion!
What a nightmare!
I sometimes wonder if I ever managed to work as a professional with numerous concurrent task loads???
Now I definitely cannot multi-task at all!!
What about you folks?
Yep, I’ve got type 1 diabetes (an autoimmune disease) so have to inject insulin 4 or more times a day, and test my blood 6 or 7 times a day.
On its own it was OK, but combined with chemo, and now Femara, neuropathy, inability to sleep etc, it sucks.
I used to be a really happy, positive person, but now, sometimes, I wonder what is the point.
Sorry, all rather depressing, I’m sure it will all seem better tomorrow.
I know exactly what you mean KittieKat…
It is such a struggle to keep on facing forward isn’t it?
Tight hugs for you.
Wx
Hi Laura64, welshgirl and kittiekat,
thank you very much for your comments and so sorry to hear you all having to live with this too.
I too have really become quite low with it all- lack of energy, constant pain and this ridiculous brain fog/memory to round it all off.
I currently work 22 1/2 hrs per week, but this really is becoming a struggle. I think because the fatigue and pain is something that is not visible, people (inc my hubbie) have difficulty understanding how awful this all is.
Although I am 47, I am finding it very hard with working and it impacts a lot on my personal life, to the point I am thinking of applying for ill health retirement. I get one day off (other than weekend) and this is spent resting as I’m too shattered to do much else. Thing is, people don’t seem to understand why I would consider this at my age. But I feel about 90!!
Do you all still work, or have you had to stop at all?
XX
Me, too.
*FMS - Fibromyalgia
*Crohn’s Disease
*OA (osteo arthritis) in spine following a parachuting injury 30 years ago.
It’s tough having hideous chemo on top of already awful everyday symptoms.
The only real relief from the FMS is when we go on holiday to a really hot country. Sadly, the hol was cancelled last year (in hosp for Crohn’s) and this year (chemo running throughout spring/summer). I need a hot holiday.
Chemo brain is just like Fibro Fog.
Tax aches are like Fibro aches.
Tax Trots are like Crohn’s.
Not surprisingly, I’m not working through chemo…
Me too.
I was diagnosed with Rheumatoid Arthritis 13 years ago. Had to stop one RA med when having Chemo then another med when having rads. Only had one flare up during chemo which was sorted with prednisone.
Had intramuscular methylprednisolone to cover me through rads - only one flare.
Have been taking Letrozole since May and don’t know whether the aches and pains are due to RA or Letrozole side effects or part of “the aging process”!! DXA scan shows I have osteopenia the precursor to osteoporosis so Calcium and Vit D is on the menu.
Not seeing the rheumatologist until September and I’m hoping he will have some answers. BC was just what I needed-not!!
Thank you Ninja for making such comparisons in symptoms!
I’ve always had so many symptoms akin to chemo and Tamoxifen with my condition that I did seriously wonder whether I’d had the treatment anyway???
I’ve walked too far today because I’ve had visitors and I just know I will creak down the stairs tomorrow morning and throughout the day.
Luckily I have food prepared for this evening!
Rest and the simpler life is now the regime for the next few days…
Wx
Hi, I also have fibromyalgia, arthritus, cevical spondilytus (excuse spelling) and at the moment I am having problems with my legs. They are so swollen and they go bright red and burn. I have seen a consultant and I have had a type of scan on them, and next Monday I have an appointment with the consultant for the results. There really bad at the minute and I really want them to ease off, but I would like the consultant to see them at their worst. Hubby has took a picture of them so I can show them the colour they go, it comes halfway up my calfs and I look like I am wearing football socks.
The problems I have is when I feel so poorly and tired, is it the fibro? is it from the chemo? Is the cancer ? is the arthritus I just dont know.
I am older than you and I have finished work, I had finished work before I was diagnosed with BC, I dont know how people manage to go to work. I get so exhausted, and I can’t stay in bed long because I am in to much pain, then I just fall asleep at anytime, I have fell asleep holding a mug of tea, in fact I did it last week, were always buying mugs lol. Hubby is brilliant and if he is here and he thinks I am just going to go to sleep he sits with me till I have drunk my tea.
I know how all you ladies are feeling, we just dont know what is making us feel so ill.
Love Heather
“The problems I have is when I feel so poorly and tired, is it the fibro? is it from the chemo? Is the cancer ? … we just dont know what is making us feel so ill”
Ain’t that the truth!
So sad to hear of your sufferings. Could i give some hope that time heals i ended treatments aug 2010 struggled to work since with foggy chemo brain. Osteroporosis no feeling in feel n fingers. But it got better and better and my strength grew with my hair. I took exams failed a few to get the brain working again and when that got better so did i. Letrozole still makes my joints ache the longer i stop/rest the worse that gets when it was hard to work i concentrated on hobbies to lighten my spirits. Take heart girls it does improve and you can learn to manage it all in time. I wish you all courage to combat the side effects of this vile desease keep fighting every day. X much love being sent to you
Dear all,
Thank you so mch for all your replies; I’m so sorry to hear that you all have this additional struggle, as well has having to deal with BC too.
Thank you for your advice and ideas on how you manage it. I am really feeling at my wits end. I was at my desk today, and could have just put my head on the desk and nod off! my muscles were screaming ,and I just could not focus on what I was doing. I think my manager thinks I’m lazy, but I really can’t help how I feel. Due to the sjogrens my eyes are very dry, especially in front of a computer screen!
Good luck to you all, hope you all have an energy filled, pain free, mobile, clear brain day! X
Unfortunately LAZY is the word I fear the most!
My family have no understanding at all and have uttered that awful word in the past, so now I feel everyone is thinking that of me!!!
As a result I have become more and more isolated and maybe a little anti-social!
It’s difficult to let people into your home when you know you can’t clear up the mess… I try to keep a balance but at times I just become so unwell/weary that I have to leave all the clutter and rest more and more…
Last couple of days I’ve had more energy (who knows why?) and achieved more tasks so calm has been restored at home but the problem is that I can overdo it, trying to catch up with household jobs and then your aches/pain returns with a vengeance!!!
It is such a vicious circle isn’t it?
Also I find social interactions just as tiring as a physical task!
Hence the reason I’ve become more anti-social!
I just wish social invitations were more regular but life isn’t like that is it? You get three invitations in a week and then nothing!
Bah humbug! I sound like a crazy woman!
Thanks for listening.
Wx
Happyshopper I do hope your manager can understand your situation better and in an ideal world you can work less hours or a reduced workload at least…
I live off a health pension now and often wonder how I ever manged my professional role. I still work a few hours though which is good for the soul.
WelshGirl, am I right in thinking that I read on another thread that you used to teach but were too ill to continue?
That happened to me, too, got hounded out :o(
Yes, hounded out seems pretty accurate!
Such an awful time when you’re so weak and can’t tolerate their threats!
Caring profession??? I beg to differ!
Sorry you’ve been through similar. I now tutor/teach a little which is just about right for my stamina but the number of times I’ve had to ‘wing’ it because of the brain fog!!!
However after 20 years experience I can ‘wing’ it with ease…
Hope that doesn’t sound too sanctimonious!
I’m sure you know what I mean…
I still love teaching and despair of schools…
I had the misfortune of changing to a new school the Sept before diagnosis and there was no real relationship / caring history and I’d been given a physically draining timetable. Successive lessons at opposite ends of the school and up & down many stairs and several different subjects to teach including two that I had no experience of teaching. Winging it? E.g.: I had two GCSE Food groups dropped on me and I’m not a food teacher and didn’t know the syllabus or anything on it. But female so I got shoved into it.
They wanted to boot me out after 12 weeks so they didn’t have to pay me sick pay but I got the union in. I still had to leave (jump before pushed) but I got what I was entitled to after all those years of service.
So glad you felt you got your true entitlement…
If it hadn’t have been for my Occ H Dr (to whom I referred myself!) I would have been booted out on the dole rather than a medical pension!
It’s not huge but I can manage on less!
Living on a fixed income would be HELL. At least now I can and do employ people to do my garden and housework which is such a support.
It really breaks my heart to read about women here who are struggling with financial agony as well as their ill health.
Are you ok moneywise?
Do hope so. None of us need that angst as well…
Your story sounds so ugly and heartless.
I still feel the emotional pain of that time when I focus on that period of my life. Just talking about it brings back the utter frustration and a shedload of expletives! f!!* b**!!** p** p**
Your story brought about the same reaction!
I have a small pension and a new career, not in education but much less physically tiring, that doesn’t pay terribly well. Actually, its not paying Jack Sh*t now, I’m on SSP.
Sorry I didn’t mean to gloat about my pension!