Daughter has arthritis and hypersensitive pain receptors

Alice's mum

My 15 year old daughter has recently been diagnosed with enthesitis related arthritis and also has developed hypersensitive pain receptors. I understand this is when the central nervous system goes haywire and continues to send pain signals to the brain, even if the arthritis is under control. Unfortunately painkillers do not work fully on neuropathic pain and so far we have been unable to find anything that relieves her pain entirely. Just wondered whether anyone has experience of the two conditions together and any advice would be appreciated.

dreamdaisy

Your poor girl, and poor you. I have no idea about any of the things you have said, and I cannot help, but I do feel for you both, very, very much. It may be worth your while ringing the helpline tomorrow: they have a wealth of info, they might be able to send you something or even just listen - they are very, very good at that. I wish you both well. DD

Alice's mum

Thankyou for your kind words. I have spoken to the helpline before and they are lovely supportive people. Unfortunately the added problem with the hypersensitivity means that her pain is amplified to normal. Even having needles are very painful. She is in her final year at school and has had to drop some GCSE's as can only manage half days in school. She doesn't go out with friends anymore just prefers to stay at home, so is becoming quite reclusive. She is unable to walk very far before the pain becomes too much.

This is a child who loved all sports, skiing, horseriding, dancing etc. I believe that settling the nervous system can be much more difficult than getting the arthritis under control so it would be great to get some advice from someone who has experienced the same and may be further down the road and able to offer some light at the end of the tunnel.

minky67

Hi Alices mum, I have Fibromyalgia & take pregabalins for the nerve pain. I have read a book that says my pain receptors are in hyper mode too, unexplained pain in muscles,joints, ligaments & tendons. Im not sure if the condition your daughter has is similar to this as i havent heard of it sorry.
My nerve pain is burning,tingling & electrical type pains.
I also have Osteoarthritis & severe Tendonitis (Others conditions too that are conected)
Im wondering if your daughter has tried any of the Fibro recommended meds like Pregabalin or gabapentins. they treat the nerve pain well for me, I also take slow release tramadols, normal tramadols, Amptripyline (muscle relaxant to aid sleep) Oramorph (Liquid morphine,for really bad days) Diclofenacs (Anti imflamatorys) It has taken me nearly 3 yrs to get the right cocktail of meds that help. Im never pain free but they help me get through the day & night.
A pain clinic might also be able to help, worthasking the GP about that.
im sorry, she is so young to be suffering with all this & i hope you can find something decent to help with her pain.
Anything else please feel free to ask, thats if anything is of this is any help.
debs

Alice's mum

Thankyou for that. We are waiting for an appointment at the pain clinic and have been told that they will try some different meds then. We have tried many different drugs without much success and yet still all the side effects. Hopefully we will not have to wait too much longer for the pain clinic.

woodbon

Hello, I hope that you can soon find some effective treatment for Alice, it must be difficult for you both to see her in so much pain. I hope the Pain Clinic soon send you an appointment and give you some treatment. I know that they do look at things from a different angle, putting the pain first, if you know what I mean. Good luck, love Sue xxx

barbara12

Hi Alices Mum
Sorry I cant help with your question, but I really do feel for both of you,
It must be awful for you has a mother having to watch your daughter going through this, and awful for your daughter having to put up with the pain.
Hopefully the pain clinic will be able to help, like debs says there are meds for nerve pain, I am on gabapentin, but also they have had good results with acupuncture for this sought of pain.
Good Luck with it all, and you know where we are when you need to talk.
Love
Barbara xx

julie47

Hi alices mum
I have no advice for you but just want to wish you luck at the clinic.
I hope the appointment comes quickly and they can help.
take care
love juliepf x

frogmorton

Hi Alice's Mum

I have two girls of 15 so I really really feel for you and your daughter too. Mine are both in their final year of GCSEs too. Not an easy time in the best of health.

One of mine has health issues too (hemiplegic migraine) and I am watching the inequality between the two of their lives and trying to even things out as much as possible.

Could you get a friend to stay with her sleepovers and things like that if you can cope with it....she needs her friends so much just now and effort from you might help her take her mind off her pain. Your house might have to be the best place in the world for kids to hang out!!!

Like Debs(Minky) I have tried gabapentin for neuropathic pain and lots on here swear by pregablin. Another gets great results from acupuncture so don't loose hope there are lots of things to try yet.

Lots of love and hugs

toni xx

Alice's mum

I do agree, the aim at the moment is to try and keep Alice's spirits up, as she does get very low. I try constantly to get Alice to invite friends around and have sleepovers but she isn't up to that at the moment as she finds it very difficult to sleep, is very tired, and doesn't want to commit to having her mates when she may not feel up to it. She describes it as always having to 'wear a mask' when she feels so poorly and sad. I look forward to the future when we have got past this horrible time.
Thankyou all for your thoughts and helpful ideas.

ritwren

Hi Alice's Mum, I'm sorry to read of the problems your Daughter is having. I note that you're waiting on an appointment with the pain clinic. The thing is her GP can prescribe Pregabalin or Gabapentin for the neuropathic pain so there's no need to wait. Some medications need to be grdually increased and start off at a low dose before they kick in so it would be worth discussing them at least with the GP. Good luck. rita

frogmorton

Alice's Mum :sad:

Bless your daughter - I know what she means when you have to 'pretend' to be ok or 'normal' when you feel like rubbish :sad:

Maybe she needs a forum like this? How would she feel about posting on the young person's forum? I think she is allowed and maybe they are the people to help her?

You take care

anything we can do to help

Love

toni xx

skezier

Hi Alice's Mum,

I am sorry to read this one. Bless her its bad enough for me as an old haggard thing.

I have a hypersensitivity to a fair bit of nerve pain. Its been long standing and they say that's what causes the problem.

As Rita says you could go see the gp and get the nerve blockers now..... they might really help her though I don't know if they use the pregabalin on youngsters.

Its a very good drug in my case and worked well for 2 years.... not so good now but it never was going to be the magic fix eh?

It can mess with your head a bit..... I certainly have had a few side effects but excluding the hallucinations they haven't been too bad.

I personally responded much better to the pregabalin than the gabapentin.... its a better drug cus its the next generation.

I so hope your daughter will be able to get something to help her. Its good she is seeing the pain clinic soon and I so hope you get a good consultant... again I have been lucky.....

Fingers crossed for you and I do hope they will soon help her. Cris x

Alice's mum

Thank you once again everyone for your kind comments and good wishes. I am expecting the appointment to be soon but if we have to wait much longer I will go see what the doctor can do.
it is comforting that people on this forum understand what she is going through as I think it is difficult for people who haven't experienced this terrible condition to appreciate how disabling it can be. I will encourage Alice to use the forum, although I'm not sure if she is ready to yet.

Thank you everyone for taking time to reply.