Chronic illness advice
haydenm
Posts: 2,997
I'm not 100% sure what I'm asking here but after a year of tests from endocrine and neurology the OH has been told there is nothing seriously wrong with her (in that sense, at least). She's been getting dizziness, shaking, hunger, tiredness, trapped nerves in her neck and a few other things. The only thing they have found is the physio saying that she has loose vertebrae in her neck (the neurologist thinks all the symptoms could be to do with that but there is no lasting damage to her spine and he can't help).
She will continue seeing the physio which seems to be helping a bit, she's been told she can't run or cycle currently. I've tried to help her back into swimming as she used to be competitive as a teenager although it's mostly open water here and we need considerably more kit to keep going through winter.
She's upset because she seems to be ignoring the important physio diagnosis part and thinks she's being told she's making it up. A part of me thinks if I went to the doctors every time I was tired I'd never leave, but I believe her that her symptoms are debilitating.
So, does anyone have any experience of anything similar? And does anyone have any suggestions to help her get into low impact sports and keep motivated? And build muscle in her neck...
I don't want to patronise but she needs external motivation sometimes (as we all do), I don't want to force her and lower her morale further.
Thanks
She will continue seeing the physio which seems to be helping a bit, she's been told she can't run or cycle currently. I've tried to help her back into swimming as she used to be competitive as a teenager although it's mostly open water here and we need considerably more kit to keep going through winter.
She's upset because she seems to be ignoring the important physio diagnosis part and thinks she's being told she's making it up. A part of me thinks if I went to the doctors every time I was tired I'd never leave, but I believe her that her symptoms are debilitating.
So, does anyone have any experience of anything similar? And does anyone have any suggestions to help her get into low impact sports and keep motivated? And build muscle in her neck...
I don't want to patronise but she needs external motivation sometimes (as we all do), I don't want to force her and lower her morale further.
Thanks
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As for swimming, surely you just need a wetsuit to swim outside in the winter? The cost of my watersports equipment far outstrips the cost of my bikes.
I go with her to Yoga to offer support which usually means I need to wear one following the session.
Definitely, I think because she's been for so many tests she is attributing everything to this mystery illness and it's making it worse. On the swimming front, we have wetsuits so boots and some head gear thing would help once it gets cold, the loch is about 300m elevation or so in Scotland so freezes fairly regularly. Would be nice an invigorating (assuming there is no ice), she always comes back from swimming feeling great so we will keep that up. She's also a way better swimmer than me so it does more for her self esteem than cycling and running
Yoga is a good idea, shes signed up for the local gym that do all sorts of sessions so maybe I'll go along to Yoga too, at worst it'll help me ride my silly aero bike...
I've definitely seen that with cycle touring and mountain biking which I enjoy, a classic relationship killer! I think now I'm best trying to gently encourage ideas that come from her such as swimming, sailing (she used to be competitive at that but I don't know how low impact it is as I've seen pictures of her competing before... :shock: ), and probably yoga. All I can do is be enthusiastic I think.
She did go to a nutritionist who gave her some sensible healthy eating advice which we try to stick to anyway. It might be some obscure food intolerance so we could consider that, if only for the placebo effect (provided it isn't massively prohibitive)
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.
Last time we did that I pressured her into it so I could propose at the top of the mountain, she won't fall for that one again
The answer would be to not walk up mountains, but she actually really enjoyed the part between we got to the top of the ridge and the proposal. Walking up hills isn't always just the boring hot slog it seems and the airy feel gives you a decent sense of adventure which can be good for your head. As with most things I think she gets intimidated by suggesting we attempt the Cuillin ridge rather than a nice dog walk from the house. Probably a much better idea...
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.
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This. Being told it's all in your head is bloody unhelpful, even when it may be correct.
I think I'll focus on the physio aspect and suggest we sign up for Yoga, that'll put her in a good mood anyway, thanks for the help guys
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.
Heh, well, we are both as needy as each other which probably adds to our compatibility I guess
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.
I've no idea if this is complete b0llocks but it sounds plausible, and easy to test. Does any / enough of it sound like the symptoms / circumstances your OH endures?
Diet changes should be looked at, minimizing processed foods and eating more fruits and vegetables as well as healthy fats.
Minimize life stresses and add exercise of at least 30 mins aerobic per day (morning works better), those should apply to everyone but unfortunately no one tells us to focus on those things until issues arise.
Yeah that's what the nutritionist said but they couldn't find any deficiencies at the time, all good advice either way! We'll sit down and have a look at our diet and work out if we think we can add more
What is actually wrong
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.
I'm not suggesting these symptoms mean the same diagnosis for others, but I had those symptoms just after some lacklustre hill reps earlier this evening.
Think I've just experienced post ride hypoglycemia, nearly threw up after some sweet hot chocolate and a couple of jelly babies.
It was only while i was shaking uncontrollably that I realised I had cereal at 0600 and a biscuit just before heading out. Forgot to have lunch after an unexpected phonecalls!
Now feeling as normal as possible for me.;)
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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.
I've had a load of CT scans, MRI's and pretty much every other type of imaging test to find the cause of pinched nerves and associated pain and functional impairment in my neck, arms and back, and all those "experts" have said there's nothing "wrong". After the neurologist told me that at my last visit, I suggested he just put his hand on my arm so he could actually feel the bicep muscle cramp when I turned my head a certain way. Then I asked him if he could trigger the same thing in his arm, since if nothing "wrong" with me, it must happen to everyone, right?
I think he was genuinely embarrassed. More so when I asked why he'd cost me and the public health system nearly 3 thousand bucks to decide nothing was "wrong".
I try and find things I *can* do, which push me up to whatever the limit of the day is - it varies. Some days walking the dog is it, others I can cope with a lot more. Just don't get fussed about "should" be able to do X, Y or Z, and enjoy whatever the head and body will permit on the day.
Yoga is highly recommended, especially the relaxation/breathing/meditation exercises.
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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.
Hayden, I see you agreed this could be a thing. I'll just add that it can play a much bigger part in the symptoms you've listed than you might appreciate - I suffered similarly about 15yrs ago and it was down to work stress and anxiety.
Exercising and getting some perspective (including realising I was "physically okay") helped massively.
Best of luck!
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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.