Help with surviving the two weeks until I see the rhumatologist

[QueenandKingMum]

I am on Naproxen, 500mg 2x per day, paracetamol 4-6 hours, and now 15mg of prednisolone and it's still miserably awful. The pain and cramping is too much. What can I educate the GP on?

I can't do opiates as I am a childminder and can't be tired.

Why are you seeing the Rheumy, what do they think it is?

Basically after suffering a miscarriage 8 weeks ago, I have had swelling, agonisingly painful joints in my hands, wrists, ankles and toes. The toe joints feel like I am walking with cotton wool under them, and I can't straighten fingers without shooting pains. They look wonky as well. They burn and itch and are just so so sore.

Knees sound like rice krispies and I can feel my shoulder joints rub and crunch - constant popping and cracking.

The rhumatoid factor came back normal but the antibody test came back positive whatever that means and referred me to a rhumatologist "urgently" 4 weeks ago. 2 more weeks to go and I could cry.

Sorry to hear about your miscarriage.
Have you tried heat/ice packs for the pain?

I have fibromyalgia and see a rheumy, it did take a while for appointment to come through. I think though if the pain relief you are on isn't working then you need to go back to your GP.

I take 20mg of amitryptilien at night to help with pain and sleeping. I am a CM too,a nd don't take co-codamol during the day, but find that naproxena nd paracetamola nd ice/heat can help

How do you deal with the constant pain? I know some days are worse than others, this is a very very bad one and I had two "good" days last week - I suspect due to my period today, but I can't see a lifetime of this.

My rheumatologist suggested 3 hot baths a day (I have ME/CFS & Fibromyalgia) it has helped some

I'm lucky in that I don't get the severe flare up pain all the time - I ahve what I call backgorund 24/7, but the flare ups happen a lot, can be anything from 1 day to 14 dyas.

I made a choice last year to only work with before and after school mindees. I take naproxen and paracetamol when i get up, then when i get back I have a rest/lie on sofa. I take my painkillers all the time, even without flare up pain as rheumy said to do this.

I also do have heat packs and ice packs which I use. Do you CM full time?

I do f/t CM - so can't do baths, I sooo wish, baths are heaven on earth. I have one every night. It's the tiredness that I hate the most, I can deal with background pain, the flare ups are shit frankly. I hate it, I am a shell of myself, I used to run and walk everywhere. Now I am just Grumpy all the time.

I am moving in 4 weeks so I need to stick out the c/m schedule until then but there are days like today where I feel like packing it all in, legal rubbish or not.

I will try the heat packs, heat definitely seems to be my friend. Looks like I am doing all I can already, goodness knows what the rheumy can add to the mix I keep thinking they will solve it all for me :(

Oh, and hey guys, it's crace btw

Can't think of anything else you could do pill wise except phone the consultants secretary direct and tell her how much agony you are in and what your responsibilities are. They can move thingsin extreme cases. Some people also find temporary relief by eliminating all starches, butthisis quite extreme and you have to weigh up the benefits if any against the restriction of the diet. Good luck. I know how miserable it is. It will get much better once you are on medication if that's whats required.

I have heard about the diet, and there is a possible link to tummy bacteria which I will look at after the rheumy.

I have RA and I've had it for over a decade. although it's better controlled than it was so have picked up a few things over the years. TbH until they know whats causing it and can start a treatment rather than just pain relief ( although naproxen & pres will help once they've been in your system for a bit) the fatigue won't have a quick fix cure. I think the best way to describe it is that your body thinks it's fighting a illness/infection (like when you've got flu) so is using all your energy on that + being in pain is mentally draining.
Not helpful when you've got to chase round kids I know (I have a 4yo)
Physically wheatbags and hot water bottles help on specific joints.
A tens machine may give some relief but some people don't like them and they get less effective the more you use them.
Try to plan your day as best you can to do only the minimum you absolutely must do. Tidying up can generally wait when your ill.
Call in all favours, people are generally willing to help out if you ask especially if it's for a short period.
Sleep/ rest as much as you can.
Baths aren't practical in the day but if you've really sore hands/wrists - fill the sink with warm water and soak for 5mins - helps a lot (I don't have a sink with a plug at work so just run the tap over them)
If you have a specific short period time that you need to push past the tiredness - try caffeine drinks such as red bull but only for very short term use (DS's birthday party for me, I barely coped without it)
Vit. C & zinc are the only supplements I take... Don't know if they do any good but they don't do any harm.

Wonky, is there no hope for you to be pain free? Part of me is struggling with the fact of a life of pain

No nononono sorry that's not what I meant, there is every chance in the long term that you may be pain free. Will explain more when I get home.

Right I'm home, sorry I will explain what I mean. one of the problems with inflammatory arthritis is there is no straightforward cause or solution. Everybody seems to have different reactions to treatments and the disease.
Firstly, I am an awful lot better now than I was at diagnosis. I was hit fast and hard in the beginning and ended up in a wheelchair for a bit, I couldn't walk, make a cup of tea or cut my own food, it was awful and I was in a huge amount of pain. I now work FT after completing 3 university degrees and have an active 4yo so you can see I've come a long way. I've tried various drugs and was doing ok until we decided to have DS and then when I went back on my drugs they didn't work so well so now I'm on different ones which were FABULOUS until a combination of an infection and a lot of stress knocked me for six again
I have a friend who sounds like he has a similar progression to you after an infection rather than MC and after 2yrs intensive treatment has been discharged from consultants care as the drugs worked so well, it may come back but so far he's been pain free.
Different people react very differently and it's difficult for Drs to predict, so there is often a fair bit of trial and error until you hit the right combination of meds. I do have periods which are pain free but I've got to be careful not to overdo it and I take a lot of scary drugs to make it that way. But as I still remember have awful it was without them I love my scary drugs.
There is a fair chance that they will sort out a medication regime which will make a huge difference to you but unfortunately this may take some time. If you ever want to chat please PM me anytime.

That sounds very very positive, thank you for sharing your experience with me. The worst part surely is the diagnosis and finding the right regimen I drugs. The wait is agonising though

It may be difficult at first with the differing combinations of pain meds. I now take
2 x30/500mg co-codamol (up to 4 times a day but I only take it twice a day if I am cm'ing)
2 x naproxen twice a day
20mg of amitryptiline at night and
20mg of citalopram, that has been a lot of trial and error. if I am really bad, i take Tramadol, but it makes me hallucinate and hyper so I try not to take it

This works to a degree, I will be honest and say it doesn't take the pain away for me, it jsut makes it more bearable, and I am more ready to cope with the day. Doing part time childminding has helped enourmously, although I realise this isn't ideal for everyone.

Also I do a lot of pacing techniques that I learned at pain clinic
Thigns like
setting a timer for 15 mintues, then doing housework for the 15 mintues. Then I take a rest for as long as I need, then do another 15 mintues.
I walk tos chool every day, then rest as soon as I get back.
I cannot do high impact exercsie such as aerobics or running, the physio said walking was good and to try and keep to the same distance as much as possilbe. So if on day you feel you could walk 6 miles instead of 4, don't jsut do your usual 4 , your body will thank you the next day.

Also when i did full time CM'ing, I used to do a lot of floor based activities , such as bricks or reading or playing with cars, so that at least I was sitting down, and using a pram/pushcchair when walking to school was beneficial too, as it gave me something to lean on.
Finally, I got an ironing lady to do it, and was about to get a cleaner in before I got very ill alst year and thats when I made the choice to go PT!

Thanks saltire, I know you are right. Advice is really to slow down, which I am rubbish at. This is the price I pay. I think what I want is the "not bad" days, I'm not greedy. Anything has to be better.

3rd day of my most recent flare up and I am really suffering, have had to cancel work last two days. Today feels like I have the flu, so swollen and so painful, sweats with tiniest effort to do housework. I have had enough :(

I can't do opiates as I am a childminder and can't be tired.

But you can get low dose coedine and titrate it yourself - start taking one at night when you are not working the following day.

Heat - in the form of baths, hot water bottles and pads can ease the pain. Conversly cold can bring down the inflamation - try putting a bag of frozen peas on your shoulder (with a barrier of clothes). If cold works better than warm then do cold trather than warm.

Have you tried voltarol gel? I used to use it when my arthritis was limmited to my knees.

TENS machine? Mine is great for my back.

Amitriptoline gets me a good night's sleep.