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Original poster

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:
user1471537877 · 13/05/2017 14:26

As you have a potential bit D deficiency it could be linked to malabsorption rather than RA

I have fibromyalgia, first they found my vit D deficiency only later did we find I was a hidden coeliac with pernicious anaemia

I was so bad I ended up in a wheelchair but within days of giving up gluten my symptoms improved dramatically

5 years on I'm still ok as long as I keep taking a the vitamins and stick to my diet

Original poster
Changednamesorry · 13/05/2017 14:16

The breastfeeding thing is one of the things I am worrying about. I fed my first for 2.5 years and loved it. I guess worst case scenario I could stop at 6 months or 12 months. I really don't want to though 😔

When you say "acute" fintress what do you mean?

OP posts:
Fintress · 13/05/2017 14:13

Try not to worry, which I know is difficult. I was diagnosed with acute onset RA 3 weeks after my daughter was born, I was devastated and thought my life was over. Because it was acute I was hospitalised and it took a few months for me to be able to see light at the end of the tunnel. I had to stop breastfeeding as I had no choice, I needed to get started on treatment.

Once you decide to start medication you will start to feel better. I've had it for a long time but unless I tell someone, they have no idea I have it. I've had some ups and downs over the years but mainly ups.

Good luck Flowers

nothruroad · 13/05/2017 14:12

I was diagnosed with RA at 19. Treatments are so much better now and there's so much that can be done to slow and prevent damage. It's best to start on disease modifying treatment as soon as possible so weigh that up against benefits of breastfeeding. Good luck.

Original poster
Changednamesorry · 13/05/2017 14:09

Tiredflower sorry if this is too personal but when you say control....do you mean just stop you joints getting worse or do you get some relief from the pain too?

tigherbounce what is reactive arthritis? I'm so ignorant still of all this Blush

livingthegoodlife I'm early 30s too. 32. Smile

OP posts:
tiggerbounce77 · 13/05/2017 14:01

If it is a form of arthritis then it can be well managed with medication, I have reactive arthritis and manage it well

Tiredflower · 13/05/2017 14:00

Hi, I have had Rheumatoid arthritis for 10 years now. I have 2 children, my condition went away during both pregnancies coming back a few months after my babies were born. I take Sulphasalazine to control my condition, I breastfed both babies on this with no problems.

There is a service called the Breastfeeding advice service drugs in breastmilk information you can message them on Facebook. They are extremely knowledgeable and usually get back to you straight away.

livingthegoodlife · 13/05/2017 13:56

Well I'm in my early 30s and was diagnosed with RA last year. It's not the end of the world and there is lots they can do. Drug wise some are a bit scary but lots are fine. One step at a time.

Original poster
Changednamesorry · 13/05/2017 13:50

God that's long sorry!!! Blush Blush

OP posts:
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