I'm I overreacting

I'm I overreacting, I have Crest for about 8 years but only diagnosed officially for 3 years.

I so very tired, still work full time but now finding working outside is causing no end of problems.

Having mood swings as it can take a good four to six hours for movement to loosen up. Medication given by consultant did help but my GP said that I shouldn't be taking them with my stomach problems.

Now been told not it eat or drink after 6pm, due to overactive bladder.

Lung function shows thickening in lungs and now started having night sweats again.

I feel very emotional as sometimes it is such an effort to get motivated for the day.

My job is very demanding both physically and mentally but 6 years to retirement.

Changed my diet, lost weight, exercise but can't swim as pool temperature isn't warm enough to stop Raynaud's flare.

Latest thing is a very itchy rash on my forearm, do feel I am slipping into depression as life and all it's problems, (family, work, money) still keep coming. Stress levels are very high in my everyday life, locked into a mortgage so need to work.

Sent from my iPhone

12 Replies

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  • hi denny duppydoo here im so so sorry your feeling so depressed hun my advice go straight back to your doctors and tell them exactly how your feeling and you need some help your not alone as all of us in this situation too get down . i have also read that you can also claim benefit for our scleroderma so my best advice to you hun is go see citizens advice on these issues as they are amazing . i really hope today is a good one for you hun keep in touch spk soon .

  • Do you have a rheumatologist? It seems your GP is at odds with the medication he or she has given you. It is not acceptable. Contact your specialist nurse or try another GP.

  • You need to be under the care of a scleroderma specialist. Please ask for a referral to one most general practios and general rheumatologist have very little experience with this rare and very complex disease. It requires specialized expertise for proper treatment and management. What medications are you on? Are you getting regular pulmonary function tests and echocardiograms? I'm so sorry you are having such a hard time and hope you can get your symptoms under better control soon.

  • Hi, I agree with all the comments so far and would just add that you're not overreacting but you are drowning - ask for a referral for mental health support: when I was diagnosed I asked for CBT (cognitive behavioural therapy) and counselling and was sent to both - the CBT to give me some tools to cope with general life stressors and the counselling to work through my personal situation. Stress (and the cold) is a known accelerant of Scleroderma so you need to learn how to cope better. There's no shame in taking care of your mental health it's as important and influences your physical health. I hope you get this support to help you :)

  • I also work full time but I am in process of cutting my hours down wen j get tired I'm moody. Apparently u can get disability benefit it's something h shud look at cut ur hours and help it make up ur money it's my only option at the moment

  • Hi. sorry to hear you are so down. I'm diagnosed with Crest for nearly three years and have changed my diet and exercise regularly. Exposure to chemicals and toxins also affect me. Above all stress is a major factor and kicks of the heartburn big time, along with other symptoms if it's not kept in check. I also work, now part time. This condition and my own learning and struggles has lead me to branch into health and well-being coaching. Your issues are precisely what I want to help others with. Not sure how, but if you want to private message me, we can chat and I'm happy to offer FREE coaching, as I'm starting out and want to flex this muscle before I start charging. P.S. I do have some coaching training and experience and years of psychology training, too. Go well, L

  • Wow, you just described my own situation. Work changes took me from 20 hours a week to over 40, and making less. Trying to figure out how to rectify the issues.

    You are not overreacting. Willing to bet you're so exhausted you can't find energy to do what's best for you medically or fight off mental health problems.

    Look for a specialist for sure as mentioned above but in the meantime be good to you.

    What about your life outside of work? Do you have help with things like meal prep, housework and errands? Used to be a bit of a control freak in those areas myself but have let an awful lot go and it does help. Rotten night sweats don't help I'm sure but get enough rest, even if that means having a child's bedtime some nights.

    Eat as well as you can and stay hydrated. It only takes a couple of days of neglecting that for me before things really start to go off the rails.

    Find moments of peace and/or joy every day - even a very small thing like watching kids play in a park for a few. Anything that makes you smile and gives you a chance to just...be. In the same vein, try to have something to look forward to every day off. Doesn't have to be time or energy consuming. A visit with a friend, time for a neglected hobby or passion, or just laying in bed with a good book. For example, I gave a whole day to genealogy research not long ago. Just said 'screw the laundry, I need this' and I was right. Made me feel whole and human again instead of like a machine here only to serve someone or something other than myself.

    I know these things seem like a good idea for anyone in general but I believe it's especially important for anyone dealing with chronic health issues. No matter what our problems and responsibilities, we still have the right to a general state of happiness and peace of mind - even if we have to snatch it in small doses out of thin air.

    Your body is likely trying to tell you it needs you. Find a way to listen to it or it will just yell louder. Hope it helps at least a little to know there are lots of us out here who understand completely what you're going through.

  • Thank you for your replies, I apologise in advance for the lengthy reply. I'm currently taking Verapamil for tachycardia and hypertension.

    Aspirin, Enalapril, Lansoprazole.

    I was taking Celexocib, this did help but I experienced stomach problems and my GP said to stop taking them.

    I was given a trail of IM Methylprednisolone 120mg and found this most beneficial, that was in September 2015. I have asked for this to be repeated but this was declined.

    I do go for repeat lung function and echocardiograms, when seeing a Locum Consultant Rheumatologist he notice a 10% decreased in lung function, that resulted in a CT scan and interlobular septal thickening and bronchial wall thickening was diagnosed in December 2016

    Lung function anytime now and may repeat CT scan if necessary.

    I believe that I just need to keep moving but some days are much harder than others.

    I teach environmental education but it is a very demanding job often overseeing many children's attendances weekly.

    I have noticed in times of stress that my speech is all jumbled when trying to deliver lessons but just put that down to tiredness.

    I will make an appointment to see my GP to talk over options for depression. I have researched clothes and layers of clothes to wear when working outside. Thank you all again, I no longer feel on my own and just being able to share my concerns has been very helpful.

    Sent from my iPhone

  • Hi, Denny! More and more studies are coming out linking the acid reflux to the lung damage, so be sure to reduce your reflux as much as possible. Number one most supported by research is weight loss (kill me) as well as proton pump inhibitors (you're on one). The dietary precautions have less strong support in large studies, so pay attention to what makes your acidity and reflux worse. I no longer do wine, red sauces on pasta, and gasp--chocolate (well, pretty much). My lungs have improved from my initial diagnosis--I used to be very short of breath just taking a shower.

    I went through a time where my brain just did not seem to function as well as it used to. I think it is a little better now plus I am probably just used to being a little slower!

    It is dang scary sometimes wondering what will happen, and feeling crummy gets old, too. Looks like lots of people here have your back! Hang in there, my friend!

  • I also work out of doors and am struggling a fair bit at present, at this time of year my work is very physical and I am exhausted much of the time, it is also stressful at times. Yesterday we had a dead calf and we also had a lovely young healthy cow slip down when they were fighting each other and we will probably have to put her down. To cap it all our neighbours have a TB breakdown which means the local badgers are spreading it again, so we will probably get it again. 2 years ago we lost 34 cattle, all born and bred on this farm, to TB. Most of them were 6 months pregnant with their first calf and I was traumatised by having to send them to slaughter. We feel completely helpless as it is completely out of our hand. We don't buy any cattle in to prevent introducing disease and the nearest neighbour's cattle are a mile away but we cannot control it in the badgers. I'm getting really stressed just thinking about our next TB test as I don't think I can face that sort of heartache again also I hate to see my husband's life's work being destroyed, we love planning the breeding our heifers, rearing them from birth and to see them go for slaughter before even being milked is just horrendous, as well as losing the next generation in their wombs.

    I take lansoprazole for my reflux at the max dose which does control it most of the time, also sleep propped up. I do get the occasional bad night and that makes a massive difference to how I feel the next day. So far I have no lung involvement but my Raynauds is very bad and I do get digital ulcers and calcinosis. Mycophenolate has helped to prevent further deterioration so far and sildenafil definitely helps with the Raynauds. Being in pain from cold and my ulcers really drags me down too.

    Have you had your iron and Vit D levels checked, mine were both v low and this would exacerbate tiredness.

  • What a small world, I work on a farm delivering environmental education.

    All our birds, poultry and waterfowl are under bird flu restrictions at the moment.

    I do hope you TB tests come back negative and it sounds as if you have enough to deal with.

    This cold weather is problematic and sitting here thinking about 150 children I have in tomorrow. Have you tried the self warming gloves, you can buy them from SRUK shop.

    Will be okay if I sleep okay, 5am start tomorrow probably same for you and we wonder why we are exhausted.

    I went out for a Birthday meal last night and had a lovely evening but eating and drinking after 6pm had me up most of the night.

    Never mind on the scale of things today is a good day after a wobbly start this morning, shortness of breath.

    Take care of yourself and fingers crossed. I will have those levels checked, thank you.

  • Thanks Denny. I empathise with you on the school visits too - although on much smaller scale, we do host some school visits although as a full working farm, as part of our Environmental Stewardship agreement, very enjoyable but it can be very stressful at times, especially as the time is always so rigid due to them having to get back by a definite time. The larger groups are always a nightmare and I have to have eyes in the back of my head. You probably find the same as me that the teachers are so engrossed or fascinated by the animals or the activities that they are not really watching what some of the children are doing!

    I am lucky in that just working with my husband if I need t take 5 mins to warm up I can, bottle feeding calves in winter is the worst. I find a good beanie hat is one of the biggest helps in keeping core temperature up esp if not very active, and it is great being able to just take it off if I get too hot when I start carrying heavy buckets and bales around, or shovelling silage. The gloves don't come off unless I have to as I know my fingers will get a Raynauds episode immediately in winter.

    At least it is getting lighter in the mornings now, although still starting in the dark, but of course when the clocks change we are back to dark mornings again for a while!

    Hope things get better for you, and yes it definitely helps coming on here and knowing that we are not alone.

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