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Feeling a bit scared ....rheumatologist on monday

(58 Posts)
Changednamesorry Sat 13-May-17 13:49:26

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.

Changednamesorry Sat 13-May-17 13:50:00

God that's long sorry!!! blush blush

livingthegoodlife Sat 13-May-17 13:56:40

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.

Tiredflower Sat 13-May-17 14:00:01

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.

tiggerbounce77 Sat 13-May-17 14:01:18

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

Changednamesorry Sat 13-May-17 14:09:52

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

nothruroad Sat 13-May-17 14:12:29

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.

Fintress Sat 13-May-17 14:13:01

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

Changednamesorry Sat 13-May-17 14:16:29

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?

user1471537877 Sat 13-May-17 14:26:41

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

Tiredflower Sat 13-May-17 14:26:44

The Sulphasalazine controls my arthritis so I have no pain and no active disease. When I restarted it after my 2nd baby I had a course of oral steroids to help while the Sulphasalazine kicked in (can take up to 12 weeks. I am breastfeeding my daughter still as she has just turned 2, I messaged the service I mentioned above as I may start an additional treatment (hydroxychloroquine). I wanted to check the safety of taking while breastfeeding, they got straight back and were very reassuring.

I think the treatment you can't breastfeed on is methotrexate, which is the usual treatment for RA. I didn't want to start this when my Arthritis started as I knew I wanted children and I didn't want to get settled on something to have to come off to try for children.

Doodlebug5 Sat 13-May-17 14:27:45

I've got PSoriatic arthritis which has similar symptoms to rheumatoid arthritis. I'm on a lot of medication but there is so much help out there and medication so don't worry at all. If he confirms your diagnosis it might take a while but the medication will kick in don't lose hope.

12 months ago I struggled to walk to my car. I struggled to get dressed. I walked with a walking stick. Now I'm 90% back to normal. I still have problems with my hands but there are aids and stuff to help

DancingLedge Sat 13-May-17 14:30:05

changed Congratulations on baby.flowers
Must be hard, dealing with this , with baby so young, and partner away.

There are some effective treatments, great someone' put where to look for advice re BF.

In a shameless and rude threadjack, tigger, would love to know more about an effective treatment for reactive.May I pm you?

Good luckChanged

Fintress Sat 13-May-17 16:27:47

changed, it was classed as acute as I went from being perfectly fine to having extremely swollen and sore wrists and hands a couple of days post birth. Within days practically every joint in my body was severely inflamed hence hospitalisation. It was a really distressing time as I couldn't look after my newborn daughter on my own until she was 6 months old. Thankfully I had amazing family and medical support. My consultant went the extra mile for me, she gave me my life back. I was also diagnosed with pernicious anaemia but not until she was 3 but that is easily controlled with 8 weekly B12 injections. I go to the gym, hike up (small) mountains and lead a normal life.

However, I was strongly advised not to have any more children due the severity of the onset, they said it would most likely happen again and could affect me very badly. I took their advice. I waited 9 years for my daughter so I felt very blessed to have her.

Changednamesorry Sat 13-May-17 20:30:09

Goodness me Fintress you poor thing that must have been really challenging
Great to hear you are doing so well now though smile

CheerfulMuddler Sat 13-May-17 20:59:14

I have RA. Treatment is wonderful. (For me - I've been very lucky.) I take loads of pills, but then the pain/swelling just vanishes.

I'm on three different types of drugs - sulfasalazine, hydroxychloroquine and methatrexate. I had to come off the methatrexate when trying for a baby/pregnant/breastfeeding, but I kept on the other two and breastfed for over a year. Had no pain while pregnant (it's a thing apparently), or for about the first year after, but after a year breastfeeding it began to come back.

You can also have a steriod injection if necessary.

Honestly though, diagnosis was wonderful. I went from taking twenty minutes to get dressed in the morning, waking up in the night sobbing in pain, hands that I couldn't clench into fists all morning (it was worse in the morning) to ... nothing. No pain. Able to do everything.

That isn't a universal experience, but fingers crossed it may be yours.

Cockadoodle Sat 13-May-17 21:46:47

Changed! Congratulations on your new Baby! I've had arthritis for about 8 years now. Very well controlled until about a year ago (4-5 months post babies). Than had a massive relapse. I've started a treatment , methotrexate, which is working wonders. I feel so much better. Increasing my dose and just all going in the right direction.

When I was first diagnosed I worried about deformity and disability but that needn't be the case with good treatment. If can you can't breastfeed for as long as you like that's sad but better than joint damage.

tiggerbounce77 Sun 14-May-17 00:45:05

Reactive arthritis is a type of arthritis that occurs after an infection, mine was due to an infected c section, it can get better over time but with flair ups when poorly, tired or stressed. As I had recurrent tonsilitus that flared the arthritis I had to have them removed too. It's now controlled with sulfasalazine, this takes up to 6 months to work, and etodolac which was pretty instant, I have also had steroid injections that helped in the early days. Take a day at a time, see what is said when you have your first appointment but a diagnosis and treatment may take a little time to sort

Fintress Sun 14-May-17 09:05:11

Good luck tomorrow changed, hope they look after you well. They might also refer you to an occupational therapist who will advise you the best way to approach different tasks etc to make things easier for you. If you are offered a steroid injection,, take it, they can work wonders.

You could also ask about physiotherapy where they will show you how to do exercises, particularly for your knees to help with inflammation and prevent muscle deterioration.

Changednamesorry Sun 14-May-17 16:38:27

Thank you everyone. I'm nervous but it's great to hear how others are getting on

RandomMess Sun 14-May-17 16:43:34

Treating your low Vit D will make a difference on it's own.

DH has PA rather than RA and did 6 months on methotrexate about 5 years ago, it has never got as bad again.

flowers

GoldilocksAndTheThreePears Sun 14-May-17 17:00:58

I was diagnosed with RA a few years back and really suffer. However that's just me, I've had bad reactions to the medications. I'm unable to use my hands right now but I'm counting the days to my next consultant appointment, because I moved I've had to stop methotrexate as my new GP won't prescribe it without me seeing a consultant and my last appointment with my old one was before I found this flat so could move. Methotrexate makes me very ill, nauseous and dizzy but there is the option of self injecting. I tried that but as my hands don't work I can't use the injector thing!

One month til next consultant, I'm absolutely counting the days so I can get back on methotrexate! Currently on sulphasalazine and naproxen, and cocodamol, and it's barely managed.

BrickInTheWall Sun 14-May-17 17:19:46

Hello OP, another one here with RA. I was diagnosed as a child but then seemed to "grow out of it" an had no problems between about 12- early twenties. Then it returned! Mine is not typical.

My symptoms always stopped when pregnant and came back with a vengeance after each birth. I have 4 DC and the first 3 were all breastfed for over a year but with DC4 I was in such a bad way that I quit breastfeeding at 6 months to start on methotrexate. It helps a lot. I was almost symptom free again on it but having a wee flare up now, just due to other circumstances.

It's not the end of the world if you can't breastfeed your baby, I know it's so nice to be able to do it but you need to look after yourself too - You are important!

Fintress Sun 14-May-17 17:31:16

I feel for you goldilocks, it's a hellish pain. There are a lot of other options to self injecting, you can be given an infusion every few weeks. Tell the consultant how Methotrexate affects you and ask what the options are.

Changednamesorry Sun 14-May-17 17:31:41

Yes...really breastfeeding....my son is already almost 4 months so I suppose WORST case I could give up at 6 months....I would really like to continue until he is at least one though of course I will have to weigh that up against medicine use needs. At the moment I'm a mess in the morning and then once I have taken an ibuprofen and had some hot shower and stretched about a bit I'm able to do quite a lot.....not like I can when this isn't happening (without being arrogant I'm normally a machine hahaha..... !) But certainly managing...but only really managing as opposed to doing everything I want to....so...I can be with the kids...walk my ain ro school and do the housework and get out for the odd coffee but I'm like 10 x slower than normal. Once little one starts to be mobile I need to be less creaky obviously ! At the moment as long as I get up an hour before the lads I can sort of warm myself up into coping mode.
I was still boxing at 8 months pregnant. It is so weird to think about how limited I am at the moment....and it doesn't exactly fill me with joy! So just trying to focus on what I can do. Luckily I live right in the centre of Barcelona so not isolated or anything. And doctor is very good and only 5 minutes walk round the corner.

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