Endurance test?

jenzie06

Feel like I'm in some sort of endurance test, and failing miserably. I'm in so much pain it's untrue. I've now had to buy an electric wheelchair and I'm waiting for it to be delivered.

I asked my rheumy to have another steroid inj into my knee as its been causing me grief. But when the rheumy did an ultrasound there was no fluid and he thought that the steroids I take had caused aseptic necrosis. Any more steroid would cause more problems. Fair enough. I had to have an xray and an mri to determine cause. The xray happened straight away but there is a 6 week wait for an mri.

I'm really struggling and in a lot of pain. The rest of my joints are painful and I'm exhausted (not helped by baby still not sleeping through). My meds aren't working but I keep going for my tocluzimab infusion 'just in case it helps a bit' and they keep increasing my methotrexate.

When I rang rheumatology to let them know I'm struggling they basically told me to drug myself into oblivion with 600mg of tramadol. I am responsible for 2 young children and can't just opt out of life.

I haven't seen my rheumy for months (due to see them at the end of March) but just feel like they have run out of ideas, have no plan and I'm just left to sort myself out.

Sorry for the whinge.

stickywicket

I'm sorry things are so difficult, Jenzie. I guess arthritis itself provides a kind of endurance test. Chuck into the mix two small boys and it becomes much harder, especially when the meds don't work.

You are quite right that being spaced out is not an option when caring for children and well done you for refusing to take it. Quite what you can do, however, is a harder thing to decide. If the steroids have damaged your knee then, clearly, they can't just put more in there. I don't know if oral steroids might be a temporary solution or whether they, too, would be precluded in the circumstances.

When you write 'the meds aren't working', it might be that they are working in terms of keeping the inflammation down though not in terms of keeping pain levels down. It's always worth keeping the disease quiet even if the pain continues unabated.

I hope your rheumatologist can help later this month and I hope the electric wheelchair helps too. If they have ordered a scan, an x-ray and an MRI they have clearly not abandoned you and are probably just treading cautiously so that they don't end up making things worse rather than better.

barbara12

Hello Jen..please don't apologize for the whinge..
I am sorry you are suffering like this,and with the children to look after..is there no one that can help out..just to give you some rest time and hopefully come though this flare..I remember you fought so hard to have your family and had to come off your meds..I hope that the MRI comes through soon then hopefully the rheumy can offer some more help...meanwhile.we are always here]...(((()))) ]xx

theresak

Hello there, I`m so sorry you are struggling at present - it can`t be easy with young children to look after, so 600mgs of tramadol isn`t a great idea.

I hope the wheelchair comes soon and brings you some relief.

jenzie06

Thanks for the replies. I had my infusion today and saw a rheumatologist (he was passing) who said he would chase the mri for me. When asked how I was I usually say 'fine' today I pulled no punches and told them exactly how I was feeling. So at least they know. It's just waiting for the NHS wheels to turn.

The pain is still pretty intense. I can't wait for the wheelchair to arrive. Although it may not be suitable, there is an alternative available but it takes time to make.

I'll keep taking the painkillers and having large glasses of wine.

stickywicket

I hope the wheelchair arrives soon and is suitable. The alternative sounds expensive if it has to be custom made Keep taking the wine but just the one

bridesmum

Hi Jen, I don't know what to say to make you feel better, but I just hope that things start to improve for you soon. My daughter has a 2 year old and is expecting her 2nd baby soon and I see how hard it is for her to cope and she is relatively fit and well. It upsets me to think how hard it must be for you to cope with your pain and young family. Do you have any family nearby who can help? I just want to give you a (gentle) hug. Deb

jenzie06

Well the chair arrived and was so heavy even my dad couldn't lift it so its on to plan B. The mobility man is bringing out a couple more options tomorrow and can push the order so I can get it fairly quickly.

My MRI has come through and strangely organised for the nhs it is before my consultant appt so she'll have the results and can decide a plan. I'm thinking of asking for a second opinion at a different hospital if she doesn't have any good ideas. It can't help for someone to look at it with fresh eyes.

Knee is still very painful and now foot has joined in. Luckily my Dad lives really close and has been helping me out with the school run. I've also had lots of offers of help from mum's at the school although I'm rubbish at asking for help.

The boys are keeping me busy especially as the baby is struggling with his reflux at the moment so we are not getting huge amounts of sleep but we're back to the doctors with him tomorrow. But they make me smile and laugh a lot and I love them to bits.

bridesmum

Glad you've got your dad to help out, I know it's hard to accept help but if you need it take it. Many years ago my friend had a baby with reflux and I remember how much extra washing it caused! Hope it resolves itself soon. Take care, D

LignumVitae

Oh my. It sounds like you are very patiently dealing with an incredibly difficult time. Many (((((()))))) to you. I hope a new chair comes very soon and I hope your rheumatologist has ideas for you and fast.

How old is your refluxy son? My two were really bad with reflux and I weaned early. I had another friend with twins who were reflux queens. She'd told me that no matter what she did it continued until she weaned. I found the same and one of mine started to refuse milk at 3 months because she was a silent refluxer. I weaned by 4-5 months and was only (not so fondly) reminiscing with myself the other day back to those vomit filled days. My silent refluxer has no issues now, her sister still has the odd vom period when she has a cold and coughs too much. I sympathise because I know reflux results in extra washing, clothes changing and other work...just what you don't need! Thinking of you and hoping things soon improve (((())))

jenzie06

He's 9 months and since weaning the vomiting has reduced a lot now it is large amounts of pain, bending backwards like a banana, screaming into the early hours and gargling stomach acid. He's on maximum doses (including an adult dose of omeprazole) gaviscon and domperidone. The gp wants to swap the dom for ranitidine which we tried right at the beginning but willing to have another try. I wanted to go back to peads but the gp said they wouldn't have anything other to offer. I think he has an issue with his aesophagus (sorry for spelling) as he can't cope with a large teat size, he chokes and had extremely poor muscle tone (no neck control til he was 5 months). I'm hoping he'll grow out of it but I think if he's still struggling at 12months I'll push for an answer.

LignumVitae

Oh that sounds absolutely awful for both of you. I think you have far too much to deal with but I do think you are right in wanting a review from somebody paediatric as opposed to a GP. It's true, they may have nothing more to offer but it's worth finding out because that would exhaust most mothers and their 9 month olds, without the added troubles of arthritis. It can't be fun for him, the poor little love. I just want to come and give you both a hug and lots of help. I'm thinking of you both, go with your gut feeling and see if you can't get somebody more specialist to just take a look. Your GP may be good but I bet they aren't a patch on you for identifying things. How is the wheelchair situation? Have you found a better option? I sincerely hope so.

stickywicket

Oh poor Dylan! I didn't realise things were so bad for him. No wonder he's screaming with pain. Has he seen a paed. doc? If not, like LV, I'd be pushing for it.