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Feeling a bit scared ....rheumatologist on monday

59 replies

Changednamesorry · 13/05/2017 13:49

AIBU to shamelessly post here for traffic?
I have had pain on and off since I was 15....always comes and goes and I am very active. I just had my second child....all fine
...but then I got sick when he was about 9 weeks....not sure if mastitis or UTI or what but since centre then the old pain is back but worse than ever.
Haven't had it for 2 years....hands are a bit swollen, terrible crick in neck, knees hurting a lot..takes me an hour of hot shower and hot rice packs and an anti inflammatory and stretching before I can get the boys ready for school run etc. School run is 2 miles walk twice a day.
Also up until recently I was carrying my baby in a wrap until one morning my knees just hurt so much I could not do it (he was 6.75kg) and I put him in the buggy....we live in a second floor apartment and for 3 weeks I have been dragging the buggy up the stairs or taking my son (now 7.4kg!) up then putting him in cot and running back down for buggy....usually 4-6 times a day. Now I have tethered buggy to bottom handrail and explained to neigh ours that I just can't. He is also a baby who wants be held in the "tiger in the tree" for long periods (last night 30 minutes of dancing in this position!)
Also due to baby and general poor sleep habits since forever I am on getting about 4-6 hours sleep a night.
Anyway....so. lots of aggravating factors. I went to GP on Monday and she arranged a blood test for Wednesday....I get a phone call on Thursday morning saying there are high levels of rheumatoid factor....and I'm seeing the rheumatologist on Monday (in Spain hence fast turnaround. ) I also was only 1 point off being deficient in vitamin D.
I'm in generally good health....a little heavier than normal ay the moment as baby is 14 weeks old and I haven't lost all the weight yet Blush but I'm not massive....I'm 9 stone 4 and 5"3. Normally about 8 stone 4.
I'm afraid. I'm scared I have rheumatoid arthritis and what that might mean for me and my family. I'm also scared in case it's something else worse. I'm praying that it's something minor that will go away...but I have been in agony for weeks now. I'm terrifies of the drugs I would have to take if it is R. A. I'm breastfeeding so wouldn't be able to start most of them for about a year when I finish I guess.
I guess I am looking for.....reassurance? Others experiences? I don't know. My partner is away for the next 10 days (other side of the world away!) and I'm just worried. Putting on brave face but actually pretty scared.

OP posts:
GoldilocksAndTheThreePears · 17/05/2017 00:16

I'm pretty sure I can drink on the drugs I currently take, sulphasalazine and naproxen, but in moderation which is always advice anyway. I do know the sulphasalazine makes your wee bright toxic yellow which takes some getting used to! Because it's coated as it can cause stomach issues, I think.

SnipSnipMrBurgess · 17/05/2017 18:44

@Tiredflower I'm sorry to hear about your little girl. I hate to see kids affected. Omg know of you are aware of it but ICAN the Irish children's arthritis network is an amazing charity that is 100% volunteer led and allows kids to just do kid things as well as giving families a bit of support x

Changednamesorry · 17/05/2017 21:03

Oh Tired flower I am so sorry to hear that about your little girl. Please God they can manage her symptoms well.
I don't drink alcohol anyway so that won't be a concern. This info from everyone is so helpful....thank you. Each message helps as I just feel more hopeful
I unofficially told my boss and will reduce my hours when I go back to work in September from maternity leave so I have a day off on a Wednesday
He was very understanding and that helped. My brother is coming tomorrow. In laws and partner on Monday. Mum on the following Thursday. Then partner and in laws back to Japan (they are 80 so he is accompanying them) and my parents back again Thursday after that. Best mate and family 2 streets away, parents at school saying will help with the kids (although I think I'll be OK it's lovely to have as partner works long hours ) other friends valling ant texting with fun stuff and arranging coffees, gym friends suppoetive (boxing trainer kind and weights trainer going to make me a plan for when I can go back to some exercise to design a weights regime to support my joints and develop muscle. )
Really lucky in the support front. And grateful to both my sons....the big one for carrying stuff when it hurts and the baby for sleeping 6 hours straight in the cot the first night I moved away from cosleeping. I'm very lucky and trying to stay positive about what I'm scared of (the medicine!)

OP posts:
Tiredflower · 17/05/2017 22:53

Thank you for your kind words about my daughter. She is doing well and her symptoms are well controlled on the medications. She got a scooter for her birthday and ran me ragged around soft play the other day, she has no mobility problems at present! The constant worry is the thing that gets me but overall she is doing well and doesn't know any different x

Sounds like you have a full support network in place, be sure to rest as the fatigue can be a struggle. Have you considered swimming as an exercise that doesn't put strain on your joints? Or Yoga? x

Changednamesorry · 20/05/2017 12:12

yes I will look at swimming soon. at the moment just don't have an opportunity.
today I'm feeling a bit sad as I so desperately wanted to take care of my in laws well when they come and tidy up for them and for everything to be perfect. it's their first time outside Japan and they are 80. we are going to tell them I have strained my back and my hands are still swollen from pregnancy because I don't want to worry them.
I'm so scared today. worrying about the treatments and whether I will get better and worrying about EVERYTHING.
I'mean trying to stay positive but I'm struggling a lot today.

OP posts:
Fintress · 21/05/2017 12:22

I know exactly how you are feeling changed, it's a dreadful feeling and hard to be positive. You will get better but it may take a little while. You might get offered an intramuscular steroid injection. If you are, take it, it will definitely give you the boost and hope you need. Flowers

Changednamesorry · 22/05/2017 16:38

thank you...this morning I felt a little better but my in laws land today and I'm so nervous!
I just keep praying the flare will subside somewhat on its own.....but I'm realistic and know that's unlikely. still waiting for next appointment.....

OP posts:
Michislick · 22/08/2024 12:49

How are you doing now?

LeopardPrint12 · 22/08/2024 12:52

I know someone with RA. She was 35 when diagnosed.
She is on immune suppressants and walks miles. I am seriously impressed as would never have guessed she had it. She gets sore easily and needs to rest a lot but lives a relatively normal life.
Don't despair OP x

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