To be losing hope living with chronic health problems...does it get better?

I got diagnosed with lupus with full organ involvement on 2011, I was 28. In the grand scheme of things and certainly compared to some. It happened fast… 6 weeks from a locum GP suspecting it, to first consultant appointment (can take years and years for some!) Said consultant said from my scans and history I had about 15 years until my body succumbed to it and I’d start shutting down. This was in the October. Until the following July/ August I became a sofa dweller…. One day I just thought “fuck it!”. Didn’t get dressed unless I had to etc. Then my Stubborn streak kicked in… I wasn’t being told when I might die!!!! Many many ups and downs followed, it ended my marriage and I ended up sleeping for Days on end. Social services nece
heavily involved at this point as my now ex said he was concerned I couldn’t look after the kids properly. I needed to be near my family and luckily
they agreed and managed a move 300 miles away to where I was from. Once I was back it was like a switch in my head. I reached out to friends and family. It took a lot of time but I found my feet. Now 14 years after that diagnosis I have my own house, a close little friendship circle and a little job. I’m off all major meds after living on morphine and needing regular chemo to control it. I pace myself and take one day at a time. They are good and bad. Things can and do get better, your outlook on life and the attitudes of those around you will help a lot. You aren’t alone even if you think you are. Remembering to put one foot in front of the other and being reasonable in your expectations long can help. If you’re having a bad day, do what YOU need to do for yourself that day and remember tomorrow is a new one. Choose your battles in life and find just one small thing a day that makes you feel better. Whether it’s using your favourite body cream/bubble bath/ face cream or reading from your favourite book for an hour, just something. And if you just warn to watch a box set in your pjs… then do that!!! Put yourself first as much as you can and even if you don’t get physically better right away. You might just feel better in yourself and that’s something reallt
important with long term chronic illness. My inbox is open if you ever need to vent or ask advice. Thoughts and flowers to you….

I’m so sorry to hear this. It made me sad reading your post.

I’m 35 now but when I was 19 I was bitten by a tick when I travelled in America. I got Lyme disease and was so poorly. I was at university and couldn’t even walk up stairs. I’d gone from fit and healthy to wiped out with bizarre symptoms. The doctor just said you have ME/ fibromyalgia as well as limes and that was it no help . I found different routes to get better myself- really decent quality vitamins mainly and no sugar candida diet. Slowly (talking a few years!) I got better. I knew I could never push myself or over do it and had to look after myself. Fast forward to 11 years later and I got bitten by another tick and got lymes again. I repeated the same process and it took maybe a year to get better this time as I was able to use all the knowledge and do everything I had before. it was awful- I had to go in sick leave, I had 2 kids , I couldn’t even lift my arms to drive the car I was so poorly. Before both bites I was totally normal healthy person.

Do you mind me asking what you have tried
? I read lots of books by Patrick Holford and Erica white anti candida. I took lamberts supplements (lots of them) and still do, and did a sugar free diet and had reflexology . I tried some strange things that I don’t think helped . It also helped in my head to take each day and not see the illness forever - even though the doctor said it would be and there’s nothing they could do . X

My DS has hEDS too - it started when he was 15, he is now 21. He has physio and mental health support, gets PIP for it and various other comorbid conditions. Acceptance has been the hardest thing for him.

But next year he's going to complete his marine biology degree. He has a partner who also has health issues - they support and understand each other. He's developed the determination to get the absolute most out of life and is currently working on finding the balance between enough movement to be beneficial but not so much that he pays for it for days.

And no, his conditions won't get better. But his ways of coping have, and you have so much insight that I have no doubt you can do that too.

PILATES!

Plates taught me a lot about how to sit, stand, hold my arms/ elbows, not lock and lean into joints, which definitely helps to control movement and then also pain.

My biggest issue is balancing Eds against hypothyroidism when it fluctuates. Maintaining strength/ muscle mass is a priority and too little or too much thyroxine makes that hard

Some people with EDS become weight lifters!

I know one! She was really bad and weak and diagnosed as a young adult, told not to lift heavy shopping.

Thought "fuck this" and started weight lifting. Now runs a gym and is a personal trainer.

I have learnt how to lift for strength after finding Stacy sims (eg when and what to eat etc) but it's best done after seeing a physio for specific targeted exercises.

I have hypermobility and it got worse in and after pregnancy but also from not being as active when I became a mum and then perimenopause. Which is when I was diagnosed. Exercise really does help but it's when you're really bad it takes a long time and finding the right things to do. I love the proprioceptive feedback weights gives me now. My proprioception has always been terrible!

Pilates is also very much recommended, even better if you can find somewhere that has all the different machines, helps with position and proprioception. Though normal Pilates does this too.

I take a variety of pain meds for nerve pain, muscle pain so it's worth approaching your GP. Naproxen, tramadol, amytriptilyn, pregabalin all work for different types of pain for me. With ldn though I know that they don't recommend some meds on top. I can't remember what though

I've got hEDS, long COVID etc etc etc.

Were you diagnosed by one of the London hypermobility centre rheumatologists? They would normally suggest a plan involving a clinical psychologist who help you to come to terms with the change to your life and your new normal

If you can get referred onto the pain rehab programme at stanmore rnoh , I found that to be the biggest help with turning round the anger/grief into learning to work with what I have, instead of thinking constantly about what I've lost

Òh wow you sound like me. Feel free to message. I have ehlers danlos and craniocervical instability plus tethered cord. I've just had neurosurgery in barcelona as nhs wouldn't help me.

I have hEDS too. And all 3 children have various forms. I have just started running again, couch to 5k. I figure I am already in so much pain I may as well. I have had surgery on my ankle to replace a ligament as I sprained it so often and so badly the ligament was so stretched it couldn't repair itself. It didn't stop the pain but hopefully I won't sprain it again the same way. People just don't get it ad to be fair I don't blame them. I just wish I could spend a day without hurting. I take cocodamol constantly. I know it's no good for me but neither is energy sapping pain

Bless you @FairTurtle .
I know living with chronic illness is challenging and often mentally painful.

My friend's daughter has medical marijuana prescribed for ehler danlhos - don't know if that's any help as a suggestion?
I live with different chronic conditions and it's hard to accept.
Am wondering if you are clinically depressed too - from what you say about dread, lack of joy, feelings of disconnection and worthlessness.

Hiya, no - long before covid which didn't impact me ironically! X

Hi
I'm not trying to be horrible, but what you want is someone to say "yes - it gets better."
I want that too, but realistically it might not - physically at least.
You need, when ready, acceptance and commitment therapy.
I need to read about it properly but it's basically what it sounds.
Your life has changed, you need to grieve that and re-align your expectations.
You need self-conpassion.
You might need sleep - so much sleep!
You might need to rage.
It isn't fair, I know that.
I've had many years of chronic illness and I think "does it get better?" is unhelpful (I learnt this the hard way!) as it is what it is now.
Sending all my love and courage, a stranger

Thank you - I hadn’t heard of the Brighton Scale. Just looked it up and I’ve scored very highly. So I’m guessing I have EDS. I’ve lost count of the number of times I’ve dislocated my knees, the first time being as a teenager.

I find the pain quite random, I don't get dislocations that I'm aware of. One of my SI joints in my pelvis is in the wrong place/out of alignment and has been for 2 years now which is causing problems but nobody seems to be able to get it back in place. Apparently the exercises I'm doing for my glutes may eventually get it there.

On bad days I just try and find some pleasure in small stuff, a good book, a new series of Bridgerton. But it's not the life I wanted. I used to be sporty and active. Had dreams of long distance walks and bike rides. Now I'm worried about going away in the caravan for a week because the thought of not having my own bed/comfy mattress worries me.

I don’t know if I have EDS. I’ve read a bit about it and wonder if I do have it. But to be honest, I can’t face going to see yet another Dr / consultant. I used to have chronic pain with my ME, my whole body would hurt and feel tender , also terrible sore throats. When I have a flare up, it’s always the pain and sore throats that’s reoccur.

I discovered I had an underactive thyroid a few years ago, I also have Haemochromatosis, Pernicious Anemia and IBS and I had a premature menopause. I don’t know if these are linked to my ME but surely nothing exists in isolation ?

Have you tried hyperbaric oxygen therapy? When I was at my worse I used to have it regularly at the local MS centre. Worth looking it up because I think that helped with my pain. Also IV vitamin drips helped.

I also used LDN a few years ago when I went through a bad flare up. It certainly helped - you can access it from a pharmacy in Glasgow. Start on a low dose and work your way up. There’s a charity called LDN Trust who are the experts on this.

Also you will get a good quality of life, last week I managed a walk around a huge shopping centre for the day, a trip to the garden centre, a trip to the park, and another day of shopping.
This week I'm not brilliant, but I know if I rest inbetween what I need to do I'll manage the cinema this weekend if that makes sense. It's literally a fine balance of resting and having fun and all the boring crappy bits between.

I’m very sorry to hear about your health. I was diagnosed with severe ME when I was 19 and was very unwell and housebound. Im
now ‘almost’ fully recovered. I’m in my 40s. I’ve had children and have had a successful career. Don’t give up hope. I still have periods of relapse, in fact having one now but nothing as bad as when I wa first ill. Have you had your vitamin D levels checked ? Also your thyroid ? Have you
come
across Dr Sarah Myhill ? Worth looking her up, I’ve incorporated some
of her advice.
I know how lonely and frustrating chronic illness can be xx