Chronic illness advice

you can encourage some one close to you to excerise. Dont even try. They have to want to. If they dont leave it. Diet could be the issue but really anyone that replied with adivse is guessing.

This is purely anecdotal, but I absolutely think that its common for people to get themselves into a downward spiral when they think there is something wrong with themselves. Proving to yourself that you are still capable of doing normal things is a big help mentally even if there are real physical symptoms. Even more so if you can push yourself with something such as cycling.

I've experienced similar myself with asthma/breathing related things. You get in your head about it and start believing you can't don anything, that there might be something really wrong, stop exercising and start googling non-stop, trying all kinds of things, thinking it's diet related etc etc. I was off the bike for 6 months, I believe I could have shortened that to about 1 month if I hadn't gotten in my head and into the downward spiral. When I got back on the bike and realised I could do that without needing an ambulance I started improving very quickly.

That was perhaps a different experience for me as I was already into cycling, but I think the principles apply to everyone. I've seen it in other people I know too.

If you can get her exercising (if she isn't already) it WILL make a difference to her health and mental well being. Could you suggest even going for a decent length hike together, may not be viewed by her as exercise then?

Hope you figure something out together.

Some similarities, but a different cause. Our daughter, then 14, got ill one day a few years back, nothing unusual initially. But it got worse and she felt dizzy and the light was bothering her. We too went through various channels and got nowhere, the best they could say was it was probably a hangover from a viral infection and it would go but it would take time. At this point she was doing nothing but lying in a dark room, she needed support to walk as she felt like she was going to fall over.
Nearly three years on she is still not fully recovered, but is massively better than she was when it started.
Initially she too felt she was being told it was all in her head and it really didn't help, no progress was being made. After a few months we paid to see a private paediatric neurologist for an opinion. She took one look at her and said how tall she was then on examination commented how flexible she was and her blood pressure was low. From that she hypothesised that as she had grown so quickly and her tissue so stretchy the pressure in the fluid round the brain and spine was too low. There was no treatment as such but by building her strength up and getting her blood pressure up she would improve. But ultimately until she stopped growing would struggle a bit. So, she had to eat salty food like crisps to get her blood pressure up and we set her bike up on a turbo trainer so she could start to exercise. This was a real turning point for her and I think it was because she was given a reason she could believe rather than the implication it was all in her head. From that point on she started to improve. We will never know if that was the real reason, but we believe this woman understood that not knowing what was causing it was troubling her and so gave her a reason. So, the physio diagnosis thing may be more important than you'd think if she will believe it.
Encourage and support her, but don't push her as I think you've already worked out. Must say it seemed particularly difficult with our daughter as it's impossible to tell when she's really feeling unwell or when she's just a bloody teenager.
Good luck with everything, sorry that turned into a bit of a ramble.

HaydenM wrote:

Craigus89 wrote:

Veronese68 wrote:

We will never know if that was the real reason, but we believe this woman understood that not knowing what was causing it was troubling her and so gave her a reason.

This. Being told it's all in your head is bloody unhelpful, even when it may be correct.

Agreed. I very occasionally have fairly overwhelming issues with wellbeing and being told to 'cheer up' is as useful as a chocolate teapot. What really helps is getting out on my bike and the OH being nice to me. We sound like a right mess!

You sound like you need each other, which is nice.

You have my sympathy. Our eldest son is going through something very similar. Extremely fit, healthy and active up until a couple of years ago. Then he started getting daily headaches, blocked sinuses, waking up exhausted, abdominal cramps and bloating, his digestive system all over the place, feeling dizzy, nauseous, and on several occasions vomiting. He also seems to catch a cold every few weeks. He's had tests for a few possible conditions, all negative, and a fruitless referral to an ENT consultant. Latest trip to the GP she thinks it may be stress related. He insists it isn't. I'm not so sure (and I've been through a series of major depressive episodes later in life)

Repeatedly Googling his symptoms he's worried himself sick, and so has my wife. He's considered brain tumours, sleep apnoea, mononucleosis, fibromyalgia, chronic fatigue syndrome, multiple sclerosis, food and drink intolerances, allergy to something in his workplace, the furniture at home or even his partner. If it wasn't stress-related to start with, the constant worry and speculation is certainly taking it's toll. As is a succession of exclusion diets, none of which he manages to stick to for long enough, and he's constantly worrying about what to eat and drink.

As a scientist I feel I should be able to work out what's going on with him, but I can't.

My older brother suffered a post viral thing - he contracted an illness while supervising a student trip in Malta and felt he had to keep going rather than rest and spoil the trip for the students. He suffered years of fatigue and associated symptoms - he had to give up lecturing for 12 months as he would lose his voice - he had to give up sport, cycling to work even kicking a ball about with his son as it'd leave him wiped. All the tests came back negative.

He did eventually recover and seems fine now but it took probably 5 years to get over it completely and it was bad for at least 2-3. Even now he is careful not to do anything too taxing - by that I mean he'll go for a bike ride but he wouldn't think about training for a sportive or running a marathon.

Im a chronic pain sufferer, result of a motorcycle accident which lost me my left arm. Its all about doing what you can, good days and bad. Cycling really helps though, and I still enjoy the competitive element, keeps me sharp!

HaydenM wrote:

SloppySchleckonds wrote:

HaydenM wrote:

SloppySchleckonds wrote:

Not sure when dizziness, shaking, hunger, tiredness became chronic illnesses.

What is actually wrong

They are often symptoms of chronic illness, it all depends how severe the symptoms are. Any of those can be seriously debilitating for someone. She has those to a debilitating degree, that is what is wrong.

If I knew what the specific chronic illness is I wouldn't really need to ask.

How severe are they, as you have said she's had tests for a year and the medical professionals say nothing is seriously wrong.

Example:
Severe – you may only be able to do very basic daily tasks, such as brushing your teeth; you may be housebound or even bedbound and may need a wheelchair to get around; and you may also have difficulty concentrating, be sensitive to noise and light, and take a long time to recover after activities involving extra effort, such as leaving the house or talking for long periods

I don't really need you to tell me if she's ill or not but thanks. Seeing as you want to know, she gets sent home from work due to uncontrollable shaking and 101 sent us to A&E twice. She gets trapped nerves in her neck so she can't get out of bed, dizziness/hunger so she can't concentrate on anything.

The point of this thread is that the doctors have said they can't find a cause (aside from loose vertebrae) and I was wondering if anyone has any advice (which has been really useful so far). The etymology of the word 'severe' isn't that high up on my list of things to button down today.

You've said its debilitating, to better understand that needs to be on a scale of mild, medium or severe.

Some on here have given examples of viral infections that can last months if not years, symptoms come and go.

I would be very interested to hear of any progress you make with this situation. The symptoms you describe are similar to what I have been experiencing for several years now, albeit I haven't had any vertebrae issues diagnosed. The other frequent-flier symptom I get is feeling cold and shivery to the extent my whole body can be covered in goose pimples. Endochrinology tests were all negative for me, albeit I have little faith in the NHS.

FWIW, I think Shirley Basso's observations are pertinent. I suspect that my issues may have their origins in stress, anxiety, and depression, none of which I have learnt to control adequately. However, I do not want to join the reported 20% of the population that take anti-depressants to sledghammer their mental health symptoms into submission and live with the physical side effects. I'd rather identify and address the root cause.

On the subject of swimming, I also read an article recently about the benefits of cold water swimming. As a non-swimmer that avenue isn't open to me, but it might be an option for you here if you can get over the initial hurdle of trying it in the first place? I bought one of Wim Hof's books to research this further as am hoping that cold showers/baths might be an acceptable substitute. Best of luck in resolving matters.