Just a moan about chronic pain and how shit it is

[Sooverthemill]

I'm so fed up for myself and for my DD. She's in so much pain at the moment which I think may be a EDS flare up ( she's not yet properly diagnosed we are waiting appointment). She is always in pain, every day and we usually manage okay really but this last 10 days or so ( and escalating since September) she's in agony, crying, vomiting with pain, unable to do anything. She's always bed bound. I'm now with her in her room pretty much 24/7 ( always around normally I never leave her I've been out of the house without her 4 times since September for short times) but at the moment I feel I need to be in her room or very close by as it takes so much energy for her to summon me ( we use texts or pain an emergency she uses a doorbell), and when she needs me I have to get there fast.

She's told me she can't go on. She wants so much to go swimming, to skate, to see her friend, to go to university. But she's been like this for 8 years. 6 years ago we were living in a hospital until a nursing home bed became available. She was tube fed then. Now she eats what she can when she can as she's 22 and the NHS can no longer force her to be tube fed and she's home.

she wants to die. I don't want her to but feel so selfish forcing her to stay alive. 3 years ago she was diagnosed with stage 4 cancer on top of her very severe ME, POTs and EDS ( diagnosed by paed but never formally so) and she begged us not to make her have chemo so she could die. I feel guilty every single day that my DH guilt tripped her into doing so.

My elder DD is getting married this year, there's no way DD could get there. I don't even want to go to the wedding it will be so complex arranging alternative care for the 2 hour ceremony ( I won't go to reception). I keep thinking about how to help her just exist every day. I am fed up really so I'm sorry. Just need to offload somewhere anonymous

[Akire]

Sending hugs and things to throw.

[Sooverthemill]

It's total shit @Akire. We've both been in tears. DH ( NHS manager) is so frustrated as he had absolute faith this bloke would help. I don't know what to do. I'm trying to think of former contacts from when she was u18 who may know someone who may know someone.

[Akire]

What waste of time. Be more active!! Bloody hell Im enraged on both your behalf’s. Do they think she has any choice? Are there really no pain killers she can try?

So here’s a new diagnosis no we can’t do anything to make it less limiting and painful no we don’t want see you again… good luck goodbye.

[Sooverthemill]

Just had the much longed for a meticulously planned telephone appointment with a rheumatologist. Total and utter waste of time. She 'probably ' has EDS but the only help for that is physio and if she 'doesn't want to' come to hospital there's not much he can do. He didn't know about the interaction ( well documented) between progesterone and ligament loosening ( like when you are pregnant) which worsens EDS. He said EDS is just a continuum of the norm and no drugs or pain meds would help. Unless she has a blood clot he's not concerned about her blood clotting disorder and said he couldn't help with bad periods ( obviously but she has to take the pill to get any kind of relief and that is little). . He had not interest at all in any autoimmune symptoms he just said he was sure physio would help, if she was motivated.

We have been waiting since September for this. Last week a locum said she needed to think about changing her lifestyle so she could be more active. ( chest infection). She has had enough and tbh so have I.

Rant over

[CloudsOfCeonothus]

Oh Sooverthemill I'm so so sorry

Having interacted with you before on here, your thread title doesn't even begin to explain how awful life is for your DD - and you . So much suffering. And so many people think we're still just tired.

My M.E. wasn't as severe as your DD is & I had many dark times when I just wanted to die. I could not find any medical people who understood how sick I was & it's a frightening place.

I'm guessing you've been all over the research? Forever. And on all the Facebook support groups? Joined Whitney's SM? Reached out to his Mum Janet Dafoe? Been in touch with Dr Nigel Speight? Dr Willie Weir? The M.E. charities?

Apologies for repeating if I've already said this, but have you tried LDN? Ativan? Strict MCAS diet? MCAS medication? Food Elimination diet? (I additionally have a problem with Salicylates). I bet you've tried everything.

After 7 years, I'm edging more towards moderate now with MCAS meds + diet, although we know what a house of cards this condition is.

I'm sorry if there's nothing new I can say. Just didn't want to pass you by. It's unlikely I'll be able to answer much more today, but I'll be thinking of you all xxx

P.S. Can totally understand you not wanting to go to the wedding btw. Just exhausting planning for you all.

[Rae36]

Your dd's life sounds so hard, I'm sorry.

[Akire]

You are right about that, it’s very sad so little help and support. How’s it going @Sooverthemill I know you don’t have much time but we are here for you x

[hellyeahllama]

I know there's nothing I can say that will make things any easier, I just wanted to reply to say I'm sorry for your situation and how ill your daughter is. I still find it unbelievable that there are so many people with CFS and it's basically ignored by the medical profession.
If you need to vent please do. I came on here because I can't sleep again because of pain. I have fibromyalgia and CFS and it's hard. CFS/ME is especially cruel because no one can do anything for fatigue. I also have problems with light and sound but not to the same extent as your daughter.
In my opinion it is definitely neurological and we are getting closer to finding answers, covid has drawn attention to ME/CFS and the penny finally seems to be dropping that it is actually real.
Maybe that will give her some hope? There are lots of good organisations as I'm sure you already know.
Hopefully the EDS appointment will come soon and they will have some ideas (lots of these illnesses seem to be linked, I'm hoping to see someone about EDS myself at some point)
In terms of pain what has she been given by the doctor?
Sending hugs 🤗

[Akire]

Sorry yes I remember you said before about extra sensory issues. So hard for her and you and the rest of your family. Are you getting any emotional support professionally?

I’ve spent years myself existing not to same degree but housebound and hardly able to do anything. Was able manage phone and keeping in touch which makes huge difference. If she can’t do that and just in dark doing nothing no wonder she feels depressed. Can we do anything? Send some cheery cards or anything? Know tiny thing but let’s her know she not alone.

[Sooverthemill]

It's not that she's not keen, it's impossible to find anyone who can meet the criteria. Social services tried and failed, the GP practice advertised and failed, I've advertised and asked everyone I know and failed. It has to be someone who doesn't drink or smoke or use any perfumed products at all for a minimum of 48 hours before they come. They have to be able to perform all tasks silently and in the dark. They must be able to do everything without touching her. In the hospital and nursing home I did all the personal care tasks including tube feeding. They just did IVs. They couldn't find anyone who could do the care. When the nurse comes to take blood or the doctor comes to see her through necessity DD takes about a week to recover from the chemical assault and the energy she has to use talking to them or sitting up or being moved. She's the most complex patient the hospital ever had with severe ME and they said they couldn't have her back unless in an emergency until she was much more able to cope with a hospital environment.

She doesn't ordinarily see anyone ( before Covid) Except her brother who lives quite close by. Me and her dad. Often her dad can't see her for several days if he has been out for lunch and mixed with smelly people ( ie normal people!). When I have to go out he is in hand for an emergency and very very occasionally we sue a sitter who stays downstairs and is there really just in case we have a fire. DD has not met the sitter in almost 5 years. We did have carers where we lived previously but social services stopped them on the advice of the doctors as it was clearly worsening her condition. If you have watched unrest, she's quite like the young man Whitney dafoe. Though I think he is worse than her as she can speak most days . Today she can't speak above a whisper and is just propped up and crying in pain.
I really don't care about my own situation as that will improve when hers does.

[Akire]

How much care support do you have? I know she’s not keen on outside carers but needs must. Have you had a direct payments assessment? If she could hire a young carer same age as her who could have some companion qualities?

[Akire]

Good to see you @Sooverthemill. Would your GP refer you to counselling for her? I guess they have been using zoom for most/all with covid so hardy be a big change. Have you found any ME groups for young people?

I’ve been very sad when I’ve watched siblings get married have kids and not going happen to me. Now I’m older it’s less issue but when it’s that and Uni and jobs and “having a life” in General it’s so hard.

[NoLongerATeacher]

I’m so sorry for you all. If you can arrange care while you go to the wedding that might be a break for you. Life deals out some crap cards and I think you’re amazing for coping so far - big hugs to you xxx