Hey, I hope whoever reading this is in the best of health ☺️
I’m a 21 year old university student who has just been diagnosed positive for an autoimmune related disorder. I have been suffering from chronic inflammation and flu like symptoms for 2 years and finally after complaining from suffering with very dry eyes for 2 years I may be coming closer to a diagnosis.
Alongside this I had weakening knees which are now painful and continues joint and body pain. X rays have confirmed some fluid in knees so could be looking at osteoarthritis. Other than this the Dr thinks I have Sjögren's syndrome due to my continuous dry eyes that do not respond to the many eye drops that have been prescribed. I have been referred to a rheumatologist and I am awaiting to hear back from them. I think rheumatoid arthritis could also be a possibility.
Other than this I suffer from IBS and PCOS and migraines. Which combined can be pretty debilitating and painful 😖
Does anyone have any advice how I can cope/manage? I am currently in my 3rd year out of 5 at university and it’s starting to get very annoying having to manage my health and education. I am grateful that my health is not as big of an issue compared to those suffering from grater illnesses. But with exams and placements round the corner it is become really hard trying to juggle both.
Any advice and lifestyle guidance would be highly appreciated.
Thank you
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sparkle557
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So sorry for you - it's a lot to be dealing with, isn't it. Are you a vet student?
There are help groups on here and on Facebook, etc, and supportive charities for these conditions. I hope you can find useful guidance from them.
I just wanted to offer you a bit of hope - while each of us is different, there are lots of people who "collect" autoimmune diseases and still go on to have fulfilling lives so it is possible! In fact our challenges give us a slightly different take on life and we learn to appreciate everything so much more that in the end we often get greater enjoyment out of life than those who have it easy.
Nutrition is key to every cell in your body - nothing works well if something is in short supply - so really focus on your diet and take supplements if necessary. Be aware that with the IBS you will be absorbing less of your nutrients than you should and this can be a challenge in itself - deficiencies from malabsorption are literally crippling. Where ever possible, you cannot beat good dietary intake because there are various compounds in foods that are much more than basic vitamins and minerals and seem to have almost magical properties. Meat and fish have the most concentrated nutrition, followed by seeds and nuts, eggs and then vegetables and fruit. A good balance of everything does more for you than you can imagine.
Not only does good nutrition help your physical conditions but it significantly helps your mental state too - which is very important as at times you are bound to get down days where you can't help but think, "why me?"
If you avoid alcohol, don't smoke and eat a healthy balanced diet you will usually be able to look so much healthier than your peers and so be "treated" to the phrase, "but you don't look ill!", as if it's your fault that they find it hard to cut you some slack! 🙄 😃
Have you heard of the "spoon theory"? If not, please Google it - you will find it really helpful for yourself and for explaining to others.
Without being inflexible, set yourself up basic routines so that there are lots of things that you do without thinking about them, so freeing up brain capacity for more interesting thoughts. Set alarms on your phone and consider whether an automatic pill dispenser might be helpful - they are amazing pieces of kit and highly programmable.
Get yourself together a "coping strategy" - a plan of things to do to pick yourself back up from a "down" day or moment. Our physical health and mental health are inextricably linked and if you can do all you can to help the bits you can control it will help you with the bits you can't.
I see how many people I can make smile, just by smiling at them! There's an ancient (1960) film called "Pollyanna" where the little girl turns the neighbourhood around by always looking for the good in things. It takes a bit of practice but if you can learn to do that, people will want to buy into "what makes you so happy"!
Don't dwell on it or turn yourself into a hypochondriac, but a symptom diary can be useful, with scoring your issues out of 10 as one possible technique, while comparing this to notes on activities and diet and life events, to give you a better idea of what works for you and what doesn't. Being aware of other autoimmune conditions can be useful too as you often "collect" them and it's good to do things to mitigate their effects ASAP.
Put pills and things you need to help you cope into special things - bags/boxes/tins that friends and family have given you (you can always give them a list of things that you need as they will want to help you) and so you can think of them and how they are helping you, rather than the conditions that force you to need stuff.
I use my phone for everything - notes, reminders and a flow chart of symptoms and "cures" - if "this" then take "that", etc. That way everything useful is always with me.
Other than that go and enjoy every second that you can!
"One life: live it"
I also find Rudyard Kipling's poem "If" is inspiring.
Good luck with your studies and placements. Remember that nowadays there is a lot of equal opportunities help available - sort of "positive discrimination" so you can get interviews and assistance and flexible working and good things like that.
deniseinmilden, it's rare that I'm lost for words when it comes to praising someone, so I'll say 'of all of the post replies I've read in the various sections on this site, yours definitely comes out top. It's very informative, clear, helpful and positive and minus a medical term or two, could be used in almost any of the sections on here. Really well done on your answer... very impressive advice given.
First of all thank you for your reply! A lot of people seem to have found it very helpful and as have I.
Nope, I am a pharmacy student.
The advice you have given is amazing. Thank you for taking your time out to go into so much detail and simplifying it for me. I will definitely be taking a screenshot and trying to implement these things into my life.
I specifically love your view on life and how to manage even when one doesn’t feel 100% able to due to their health. It is common knowledge for one to be healthy and try to live healthily to eat and obtain as much nutrition as you can. But so little is mentioned on how to cope and manage and still be able to feel like everything will be okay.
I am a fairly positive individual and always have been from a young age. Humble brag moment but I have always been praised for my positivity and smile from a young age. It is easy to make others smile but can be difficult to cheer yourself up- especially when you are so used to being the one who cheers others up.
I will definitely check out the spoon theory and the poem you mentioned. I love reading, books, movies and tv series are definitely my form of escapism from the worries of this world.
Once again, I appreciate your words of wisdom and comfort.
Firstly, what a fantastically, informative, positive post you have received from deniseinmilden. I would just like to add one more thing that I personally have found very helpful when faced with "the wall" as I call it.
I used Mindfulness. There are so many apps out there, I use 'HONEST BROTHERS' but that might not be for you.
Any form of meditation, relaxation etc can be helpful if you are able to allow yourself to go with it but you have to find what is suitable for you.
I work in a Primary School, we use children's mindfulness apps and the they do 10 minutes every day after coming in from lunch break. It's great observing how they become so settled.
Of course, like anything, it's not for everybody but please give it a try.
That does sound really helpful. Unfortunately, I suffer from anxiety and I have found that every time I try ti medicate or use relaxation videos weirdly enough, they make my anxiety worse.
Sounds super silly I know. But the more they try to get me to focus on my breathing the worse it gets.
I have not tried mindfulness but I sure will give it a go. That sounds wonderful. I’m sure if it can help relax excited children it should also be helpful for me.
Well done for trying. That's the first positive step. Try putting headphones on, lie on your bed and close the curtains. Or just lie there without headphones. You may even be better with visual mindfulness, it's whatever you are happy with.
Please give it time and try it out for a short time every day.
If you do start relaxing, your body may feel a bit different as it sounds like it is possibly in a state of tension quite often. If this happens, and you get a bit worked up, just stop and try again but don't try and make yourself relax, just let it happen.
You've done the first step in wanting to give it a go.
As the spoons theory is mentioned by deniseinmilden -you might like to read this post from the PMRGCAuk forum -relevant to all chronic/autoimmune illnesses -
Hi there , I see a couple of long posts here, but have a couple of options. Ihave had symptoms like yourself for many years but am still around in my 70s so hopefully you will be too. The suggestion of mindfulness can easily be tried via the one on Arthritis Action website, there is a video to help its aimed at those in constant pain. try to keep stress to a minimum as that just heightens the symptoms and beware if a Dr thinks it is stress it will take longer to get it sorted. Versus Arthritis is a group who campaign for better outcomes for people with Arthritus and future changes to acknowledge that chronic pain and illness can be more depilitating than seriuos illness that we have treatment for. My advice would be if you do get a confirmed diagnosis of your problems try going on a health research project as they get lots of funding to test varied patient outcomes. join a patient group with similar illness as they often have ideas on tried and tested treatments . But beware all the NHS routes take time sometimes with no help at the end as it is not a treatment they can provide. Every best wish and Oh you are not too young for arthritis some people are born with it, and some inherit it and others just get it as they get older.
May you be blessed with an even longer life! That does give me some reassurance.
Stress is a students best friend 😂 but you’re right I’m sure I can find ways of not over stressing and try to manage it.
NHS is so underfunded it’s struggling to provide for patients and it sucks. Such long waiting lists for referrals and appointments and some Drs don’t take young people such as myself seriously. Thankfully mine hasn’t dismissed my problems but it’s only taken this long to try to find an issue. I should have a referral by 9th June if the NHS think I need it.
GPS aren’t as helpful as they used to be. Sometimes they can’t find an issue or sometimes it’s a half done job and one is left clueless.
Thank you for your advice I’ll definitely be looking into it.
Your definitely not too young for arthritis because arthritis doesn’t care about age. You should have your thyroid labs done (TSH,FT4, FT3, T3 and antibodies) thyroid disease is also known to cause joint and muscle issues and a laundry list of other issues.
I have had my thyroid tested before and it does not seem to be the problem. The only reason I’ve been tested for autoimmune disease is due to my severe dry eyes. And as I’m a pharmacy student I learnt about arthritis recently and all the numbers were adding up - the knee pain and crunching bones.
The X-ray showed some fluid but Dr is more concerned with Dry eyes and an autoimmune disorder which could also explain rheumatoid arthritis. It’s all probably linked.
Nope, nobody suffers from any autoimmune disease in my family. And I do not have psoriasis either.
There have been some brilliant replies here. I want to mention one more thing. Hidden allergies or chemical sensitivities can cause a lot of health problems. Because you are young to have such a collection of fairly serious health diagnoses I wonder if this would warrant some investigation? They can be hard to track down. It can be even more complicated if there are multiple sensitivities, especially if they are not presenting as usual allergies.
Another possibility for some of your issues - they might be a result of some sort of viral illness you suffered in childhood, akin to the now much-talked-about long covid. We now know, for example, that Epstein Barr may be implicated in causing multiple sclerosis, that cervical cancer is caused by human papillomavirus, and more research is now happening to track down other possible viral triggers for diseases.
Now that I think about it I am always very itchy and very inflamed and I just pop a antihistamine assuming it’s hay fever. I do not have known allergies but sometimes I’m sensitive for no reason- such as random itchy patches on my face or red itchy lumps. I assumed the itchiness was due to the autoimmune disorder.
I got covid during the first lockdown back in 2021 around April I think it was. The feeling of being continuously unwell and flu like inflammation symptoms started around September. They continued for a while and Dr tested for all sorts of viruses and antibodies but they all came back negative. Unfortunately for myself I literally caught covid again this year in March just a couple weeks ago.
Maybe covid could have triggered this autoimmune issue because my eye sight got worse after covid and my dry eyes have continued to worsen since.
I understand, my parents are completely baffled to why I have issues such as weak crunchy knees that usually older people suffer with.
My daughter had some food sensitivities when younger and this triggered a lot of interest on my part. I did a lot of reading.. As this is now about forty years ago I doubt the books I read then would be relevant, if I could even remember their titles, but I remember one case of a gentleman who was allergic to grains, maybe a specific one, I can't remember now, but still had whatever his symptoms were no matter how strict he was. Turned out he liked some sort of liquor made from the grain he reacted to, forget which one it was. Once he stopped drinking that his symptoms finally cleared up. It is interesting how very unexpected and subtle these causes can sometimes be, and most doctors wouldn't even think of investigating anything more than the usual suspects!
Hi there I think the rheumatologist is the best person to assess you - they are so knowledgeable
I used to be a sick kids nurse and regularly nursed children and young people with various forms of arthritis- it can be very complicated but this is the bread and butter of a rheumatologist, so once you get to see them I have no doubt you will be diagnosed properly
Just to add to all the wonderful comments - my daughter was in a similar situation and her University was amazing, she was allowed 20 minute rest periods during the exams, which she could take when she needed, to help with the fatigue and they were even able to adjust some of the exams to accommodate her so that she didn’t have two exams close together. If your Uni has a disability officer it’s well worth speaking them! Good luck!
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