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Chronic pain In teen. How do u cope.

8 replies

Paranoidandroidmarvin · 01/12/2021 14:49

My son has chronic pain in his legs. All being looked into etc. My question is. If you have a child with a chronic pain illness. How do you cope.
Sometimes I feel so helpless. It has sent my anxiety through the roof. I spend all my time worrying. Worrying about the amount of pain he is in. Worrying about his future. Will anyone want to be with someone who can’t walk very far.
It is so hard to see him like this. Anyone in this situation and have some coping techniques?

OP posts:
JoMumsnet · 02/12/2021 09:49

Hi OP, we're just bumping this thread for you in the hope that someone will be able to help. Flowers

JuneOsborne · 02/12/2021 09:57

My son has dreadful pain in his feet. He's 16 and it's been going on since he was 11. Diagnosed as severs disease but I think if it was that, it should have gone away by now. He's virtually finished growing.

We make sure he has a supply of painkillers, that he had socks and shoes that are the comfiest we can find. We've taken him to an osteopath in the past and I've offered to pay for physio privately, but he seems less keen on this.

I remember being beside myself when he said he would have them amputated to get rid of the pain. We got him specialist insoles made up for his shoes.

Nowadays, he complains less, but that's because he's used to it, poor lad. I make sure I pick him up and drop him off places as often as I can.

I bought him a heated throw and encourage him to really rest when he's at home.

It sucks, doesn't it. Do they have any idea what's causing the pain? Has he found anything helps with the pain?

Big hugs, I know how you feel.

Paranoidandroidmarvin · 02/12/2021 10:17

Thanks mumsnet net for bumping. Apparently he has very tight muscles and very tight fascia. Which is not helped with exercise. No pain killers work either.
I am struggling to find it hard to watch him the way he is. I worry he will end up alone as he can’t do anything. And he always says who wants to be with someone who is like him.
Funnily he has a wonderful girlfriend. But he is convinced no one will stay.
Some times I just want to run away and hide

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BleuJay · 02/12/2021 10:33

@Paranoidandroidmarvin

Thanks mumsnet net for bumping. Apparently he has very tight muscles and very tight fascia. Which is not helped with exercise. No pain killers work either. I am struggling to find it hard to watch him the way he is. I worry he will end up alone as he can’t do anything. And he always says who wants to be with someone who is like him. Funnily he has a wonderful girlfriend. But he is convinced no one will stay. Some times I just want to run away and hide
Is it Osgood Schlatter’s?
dontgobaconmyheart · 02/12/2021 10:46

What are they attributing this to? Can he not be referred to see a physio OP? Or indeed a specialist physio if he hasnt got anywhere so far. Tight muscles can usually be improved by prescribed exercises (from sitting/standing) and stretching to target them.

Re: pain has he seen dedicated pain management? You can ask to be referred to them or the community pain team or even occupational therapy if he needs mobility aids. What has been tried? There are a lot of options, combinations of meds and playing around with doses when it comes to pain relief, the NHS offers alternative therapies also. It can take years to find what works. The goal is to reduce pain to make things like more exercise more manageable, nothing will likely erase it.

I was chronically ill as a teen, and am even more so as an adult. I understand his anxieties and frustrations but as you say, he has a girlfriend so clearly 'someone will want him', as will many others. I've not ever had any issues finding or retaining lovely supportive partners as a result of not being able to walk far (among other apparently unattractive things Hmm). Not everyone is ableist, even if the society we live in is.

Reduced mobility or capacity is not no capacity. I'm sure there are plenty of things he can do, they just may be more challenging and require thought or planning, allowances made, use of mobility aids to prevent fatigue or pain, working towards a kind of job that could be done from home. He is certainly not alone in being unwell as a young person and perhaps it would help him to speak with others via online forums.

What would have helped me as a teen would have been for my parents to believe me, understand I lack capacity and accommodate it instead of hoping it will go away, a sense of calm and to support me with advocating medically for more tests and a full diagnosis and generally being more positive. My DM did and still does spend the vast majority of the time distraught at the state of me and expressing her sadness at how my life has turned out and I have essentially removed her from my life as I don't share the sentiment and find her draining. Life does go on when you are chronically unwell and dwelling on differences to normal people and difficulties faced rarely helps. Illness may happen to any of us at any point.

There is nothing stopping you from speaking to your own GP for support with your anxiety. These things are hard and knowing how to cope for the best is difficult.

PinkPlantCase · 02/12/2021 11:00

I’m another one who had chronic pain start as a teenager.

My love life has turned out fine. Actually everything has turned out fine. I’m married (to someone very lovely) have DC and a fairly successful professional career. Uni was tough and learning what works for me was hard but I got there.

I agree with PP that what would have really helped me was if my parents tried harder to make accommodations. Eg, there are times when having access to a wheelchair would have made my life much easier and enjoyable but I think they’d have been so sad at the thought of me needing one I never really able to ask.

Also my parents always wanted to find a way to fix it. Whilst I that agree finding out what’s wrong is important what helped me the most and helped me to feel happier was accepting.

Accepting that this is how I am and that’s okay, if I have a flare up of pain even now my parents will ask what I’ve done to cause it or ask why it’s bad. At this stage me and my DH know that it just gets bad sometimes and that’s okay. There is rarely a reason. It’ll pass, it’s just part of our life.

There’s somethings I can’t do but if I’m honest I don’t really notice or remember what I can’t do anymore because our life is so tailored to what I can do that it rarely comes up.

Sorry I can’t help from a parents POV but I hope that’s helpful OP

Highlanders372 · 02/12/2021 12:13

Please try not to worry about him being alone in life. I have a chronic illness and the most wonderful DH. It acts as a filter for the arseholes in life as they just don't stick around, only the lovely people do and he will find them or they'll find him. He'll be ok.

Paranoidandroidmarvin · 03/12/2021 07:28

Thanks for the answers. I try to follow his lead. When he has bad days I do things for him so he can have good days and leave the house.

I always ask him what I can do to help and he is good at telling me. Sometimes it is just a hug

And a listen to what he is saying.
He is a big gamer and has lots of online friends so he always says he doesn’t feel lonely. It’s good to hear him laugh with them on his bad days. His girlfriend is a gamer as well so they will often spend ‘time ‘ doing things together online which I think helps when he is having a rough day.

I just feel sad for his future. If u see what I mean.

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