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

[FairTurtle]

I am struggling so much at the moment. I've never felt so lonely in my life. I've had a really difficult few years living with Long COVID. It's changed my life in so many ways. I'm currently not able to leave the house or see my friends much. I don't have a partner. I don't think I'll ever have children. I'm in my early thirties.

Recently, I've developed chronic pain for a few months too. In my back and arm and neck and hands. I was diagnosed with hypermobility spectrum disorder/hEDS, which is likely what's causing it. Apparently it can get worse with age. There's not really any treatment and the pain gets me down so much. On top of the fatigue and post-exertional malaise. Dealing with one of those would probably be bearable - but all of them, I just can't cope.

It's hard to believe this is my life now. Sometimes it feels like a bad dream. I try really hard to keep my spirits up. But I feel so disconnected to everyone around me. Because it's been this way for 3 years now. I have nothing to look forward to. All my ambitions ruined. Just endless days of managing my health and symptoms. Doctor's appointments. Assessing pain levels. Trying desperately to find new solutions. No achievements. No accomplishments. No interesting weekend plans. Nothing to talk about. Nothing to update anyone on.

My life was relatively good and problem-free before all this. I did well in education, became a solicitor. I now only work 2 days a week and haven't progressed at all since the pandemic. I'd never endured any real hardship beyond the normal things, before getting sick. I have supportive parents for which I'm so grateful. They are financially comfortable and have supported me - and I'm able to get pretty much whatever health or care I need. Private consultants, massages, etc. I'm not saying this to boast - I recognise this privilege - but even with all that, it's not made much of a dent in how I feel day-to-day. Care for these conditions seems to be quite poor.

But nothing feels like enough anymore. I feel a constant dread upon waking. I rarely feel joy. I feel so, so worthless.

I don't know what I'm asking really. I don't want to spread doom and gloom. I stay away from chronic illness communities because I don't want to believe it'll never get better.

I guess I'm interested to know whether anyone else has any experiences of really struggling with their health for months, or years. And then regaining a decent quality of life eventually. I wish I could just feel well. Even just sometimes. Even just half the week.

I'm so sorry for my rant. Hope everyone is doing fine.

Hello! I have hEDS too, as well as various co-morbidities.
If you've just recently been diagnosed, what you are experiencing right now is like the first stage of a grief, and it can take years just like any grief, to work your way through. That anger of I can't do this or this hurts or 'oh for heaven's sake now I've dislocated my jaw', that's very real and it does take time to reconcile with.

I'd like to address your fear that it can get worse with age. Something a lot of people (especially in the support groups I find) get wrong is that they call it progressive. It's not, it's cumulative, and how cumulative it is is so individual. If you don't personally get many dislocations right now for instance there's no guarantee that'll suddenly change. About a third of us have our joint capsules stiffen as we age and dislocations actually decrease. It is a fear that probably most of us have if we're being honest, but it's the mitigations we put in place that help.

The first thing for you is I imagine getting everything under control? When things are out of whack, it's utterly shite, but genuinely it can be better.

@QwestSprout Thank you so much for your response.

It's so strange - I'm 31 and had never had disclocations or subluxations. But recently my shoulder/collarbone have been popping (assuming it's a minor sublux) constantly throughout the day, and it's caused a lot of pain in that area, and my arm. I had sudden back pain start too around 2 months ago, which I assume is strain from contracted muscles(?) because my back doesn't seem to sublux. But it's bizarre that prior to diagnosis, I had never even noticed hypermobility for 30 years! I've heard that covid can sort of "awaken" it in some people.

Thank you for clarifying re cumulative. That makes a lot of sense. I guess I'm just terrified this pain will be forever, as it's been around for a few months now.

Can I ask - when you say get everything "under control", do you mean any specifics methods? I am due to to see a hypermobility specialist physio next week, who I am hoping will be able to shed some light.

I hope you're managing to live well, and have a good quality of life, despite the hEDS and comorbidities 💐

One of the biggest problems we have is that our muscles are completely overworked because they're desperately trying to keep our joints in place and do what our tendons/ligaments often can't.

So by under control I meant: medication regimes for any co-morbidities like GORD/IBS (and the diets that go with them) and then exercise. I didn't put it in my first post because in the support groups (which is why I don't tend to use them tbh) you can get a lot of let's say push-back (and often outright aggression) for suggesting that a lot of our deterioration can be helped - not solved - with physio. So I'm really glad you've got in with a physio, and one who knows EDS or just hypermobility at all is fantastic. Mine didn't know much but was happy to learn.

And then finally, but should be first really, getting pain levels under control. One of the fun things for me was discovering that 'normal' people don't have a baseline level of pain! Are you working through the pain ladder with your GP? Ketoprofen gel is far superior to Diclofenac (Voltarol) for the sort of pain we tend to get, as a random hopefully helpful aside.

@QwestSprout The diagnosis did explain my chronically tight muscles! It was kind of an aha moment.

Noted re physio. Do you feel it's helped with your pain and to help you feel stronger? I currently don't take any pain management besides the occasional paracetamol, but tbh maybe I should. I guess I worry about becoming dependent, and then getting "rebound pain" or something. I asked my GP about pain management but she basically just said "keep doing whatever you're doing now." I'll ask about that gel! Thank you!

I'm so sorry to hear what you've been going through. It sounds very tough.

You're so right to stay away from negative forums. I strongly recommend Raelan Agle's channel on youtube. She interviews lots of people who have recovered from long covid/ me/cfs/ chronic conditions, & what they did to get better. It's very positive & there is so much information.

Wishing you lots of luck...

Exercise definitely reduces some of the inflammation and thus some of the pain, yeah. The only problem is I genuinely utterly detest exercise 🙃and so am quite terrible at maintaining any sort of regular progress.
Some people with EDS become weight lifters!

If you're happy with that as pain management tbh I'd say that's great. I am restricted to paracetamol (opioid allergy, literally can't have any). If you find yourself going back to bed every afternoon just because it's more comfortable and doing less and less that was my 'oh maybe I need to go back to the doctor' moment.

@QwestSprout I didn't realise EDS also causes inflammation! I assumed the pain was from the joints constantly overextending. But I guess that is what causes the inflammation? I'm so clueless...

Tbh I'm not really happy with the pain management as I'm generally quite miserable abou tit all. But I'm hoping maybe the pain will reduce naturally as I do the physio...have you found GPs to be sympathetic and helpful with regard to helping you control the pain? I wonder if NSAIDs are also an option.

Hey, I have EDS as well. Currently having a bad time but there are good days and bad days I guess. My main advice is to try and keep moving as much as possible. I know it's hard, I'm in agony with my back atm. I do seem to be on an overall downwards slide. I stopped running but took up cycling, I'm now struggling with cycling, so took up weightlifting, now this seems to make my back worse. Tried swimming last week and couldn't manage that! I can still walk the dog!

I do need to go and talk to the GP about pain relief as ibuprofen and paracetamol is not cutting it anymore.

I have a good osteopath who recommends exercises for me. I got a book recently as well which was recommended - called Built To Move. It is about trying to keep you moving as you age, it's not written for EDS but I think it's very relevant. Has exercises/movements to build up to.

I find stretching important, my EDS is causing me to stiffen but I appreciate for some EDS people it might not be good to stretch!

NSAIDs are definitely an option. First line is usually to tell you to alternate ibuprofen and paracetamol, and then it's Naproxen or Meloxicam. They can shred your stomach though, so you'd (should) be given a PPI to go with them. When I could take Naproxen it really did take the edge off.

And I hate that DH doesn't really get it. I spent all day Sunday laid in bed as it's the only place I'm comfy, I can't even sit on the sofa most days. And he sniggers that I'm being lazy.....we don't have small kids so it's not like I'm dumping shit on him. Everything was done which needed doing. We're going on holiday this weekend and I've packed a bag and am in agony now from bending down getting stuff out of drawers.

@QwestSprout Thank you, I will ask the GP about these! Sorry for all my questions - just one more thing. The rheumatologist who diagnosed me did so very casually - "oh, it's just hEDS." Got me out of his office as fast as he could. Do you think it's worth me trying to find another EDS specialist doctor - I guess there's not much they can do anyway?

Another EDS zebra here too! 👋

You'll get good and bad days, on the bad days you need to rest.
Do not push yourself as it'll make it worse.
On the good days pace yourself and don't push yourself.

I wrap my joints up with body tape, use a walking stick/wheelchair on my bad days, I find it helps a lot especially the tape!

Also nap, power naps are the key.

@CormorantStrikesBack I'm so sorry you're having a hard time at the moment. Have you found in the past that you eventually recover from flares? Is the pain just random, or does it coincide with dislocations etc?

I'm sorry your husband isn't more sympathetic. That really sucks :(

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

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.

@TheCheeseThief This means a lot, thank you. I'm so glad you're able to have fun in between flares :) I'm gonna ask the physio about taping next week. My shoulder is seriously messed up.

@Frolie I'm so glad you recovered substantially, but sorry you still get flares! Do you mind if I ask - do you know if you have any hypermobility? Just because I've seen recent research linking being hypermobile to developing conditions like ME, long covid, etc.

Did you have chronic pain with your ME? Did it improve? Thanks so much for responding. 💐

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.

@Frolie Totally understand why you don't want to go searching for more consultants! I think it's helpful to know just so you can keep your joints strong etc, but if it's not affecting you too much I wouldn't worry about it. In case you are interested though, there's something called the "Beighton Scale" you can find online and test yourself for your range of motion in your joints. V easy to do alone. I think if you have above 5 points it's classed as hypermobility spectrum disorder?

I am on LDN and I think it helps a bit with sleep? I am still titrating though so hopefully will get further benefit. I've not tried HBOT but I will look into it! Thank you so much.

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.

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.

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

@Ksqordssvimy I think you're right - acceptance and commitment is important. Just really struggling, and having hope that at least some things will improve.

Do you also have long covid/a related condition?

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

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.