Rheumatoid Arthritis

[Babyjoy]

Oh Rachel, I feel your pain and distress - it's truly is heart-breaking no matter what anyone else tells you. Reading your post brought tears to my eyes, because I went through exactly the same situation with my daughter but when she was four months old. I felt so much guilt and so much anger at having bloody RA and not being able to do the things I wanted to as a mother. Everyone will say to you "Well, at least you had seven months of breastfeeding" and "thats more than some mothers get" etc, etc, but I still felt sad about it for a long time because I felt like a failure. My daughter is almost two, and is thriving, but I'm really envious when I see other mothers breastfeeding. I will definitely be doing things differently next time we have a baby - trying my damn hardest to keep RA in its place by not stressing out so much! Stress was a big factor in me stopping BF as well as the side effects from the steroids I was taking.
I know it's really hard for you now, and hard to accept, but your little boy will be fine. In fact, he won't even remember it! Be prepared for changes that may happen (change in sleep routines, etc) as it was very stressful for my daughter switching to a bottle - she refused it so we had to wean her within 24 hours (tough love). But it sounds like you have weaned your son slowly, so the transition will go fine and he won't even know. I do recommend having your last feed in a quiet, happy place, where you can just enjoy being with him. My last feed with my daughter was at 2am in a very sleepy state in bed, and I barely remember it... I wished I had fed her one more time and really appreciated that special four months we had together.
Once you are on MTX you will be amazed at the difference - you just feel like a new woman! It's been a life saver for me and that also means you'll be able to do lots of fun stuff with your children without pain... which is what this is all about - if your pain is gone, you can be the best mum ever!!
Lots of hugs to you and bub, and if you want to talk more about it, just PM me as I'm happy to help.

[RachelAlexAndSam]

Thank you so much for your lovely words. I really makes a difference to know that other people have gone through this. I really never thought it would be this hard and I just wish it wasn't happening. You are exactly right about the comments I get from people about Sam getting 7 months of breast milk. But it really isn't a consolation at the moment. I was describing the feeling to my husband as similar to a break up with a boyfriend. The feeling of not being needed is quite torcherous. But I know the feeling will fade and pass with time. Just not nice while it's happening! I fight the urge everyday to feed Sam just thinking that one more time won't hurt, but I know I won't be helping myself or my kids.
Today was a real eye opener for me. It's the first time in 6 months where I felt almost normal. I have been on Prednisone since Wednesday and it has really helped. The pain is still there, but not to the level it has been. I could actually get down on the ground today! Very exciting.
I'm planning on feeding Sam for the last time on Wednesday night before he goes to bed. There will be a lot of tears (Im starting to cry just thinking about it) but I know we will be ok.
Thank you for your support. It helps to talk to people who really understand.

[butterfly_warrior]

Ah... prednisone! I have a love-hate relationship with it... I do ok when I'm on 10mg per day, but after IVF transfers I need to increase to 20mg per day. I know that 10mg doesn't control my pain fully, but I also know that 20mg makes me really angry and aggressive and just generally not nice to be around, so I limp along in pain just so I can stand to be around myself. We're using the prednisone to provide some relief with the arthritis, but also to control the autoimmune problem that we think is the cause of the arthritis and the reason my body attacks my babies. I don't often admit to my doctors how bad things can be, because then I know there'll be pressure to stop IVF and go to methotrexate, and I'm just not willing to do that yet...

I really can't say that I understand how you are feeling with having to give up breastfeeding, I can only imagine that it's absolutely devestating for you.

I think it's odd that this evil condition can effect people in so many different ways. It really is quite horrible to experience it, and even worse that it's so hard to predict what will happen for someone with it.

BW

[Babyjoy]

Hi Rachel, that's great that you are feeling better with the prednisone, though I do agree with BW that it's a love/hate relationship! Steroids are really great at getting you moving but crap with the side effects! I had the most revolting mood swings, and a horrible skin crawling feeling on my body, but when you're pregnant and breastfeeding, it's about the only thing you can take that is safe for baby, so you just put up with it.
The scary part is trying to get off steroids - it took me six months!! Your body really gets used to it, so even when I was down to 1mg per day (plus MTX and fenac), that was enough to keep my body going great, and then when I would stop taking that 1mg, the pain would come back... you definitely can't drop it when you are having a flare and you do have to be in the right mindset. I am trying my best to not go back on prednisone for my next pregnancy, although it may become inevitable if I want to breastfeed. We are currently TTC so I'm off the MTX (have been for two months now) and I'm only taking diclofenac (voltaren) for the pain. I'm having good days and bad, but generally there's at least one joint that plays up each day - it's a bit of a lottery every morning as to which one it will be!! Today it's my left wrist, so I really should stop typing!

Best of luck to you ladies - it's so nice to be able to talk about these things with someone who understands. Lots of hugs to you Rachel for Wednesday.

[RachelAlexAndSam]

Well it's done. The last breastfeed and it wasn't as sad as I anticipated. I made sure he was in a good mood and it was in his room before he went to sleep. I had a little cry but feel ok and that I can move on and get rid of this RA. I took my first dose of Methotrexate with dinner and am looking forward to hopefully waking up soon with less pain. I know it will take a few weeks.

The Prednisone hasn't given me any side effects yet. But it's only been a week. My Rheumatologist told me I could feel quite euphoric or quite depressed. So far I've been feeling quite euphoric but I'm not sure if it's because I've had some real relief at last. We're reducing the dose this week so hopefully the pain won't start back. Fingers crossed.

Thank you for your sympathy BW. I must sound like such a whinger. I know I am very lucky to have had my kids before the RA came on. It really gives me a new perspective when I consider what you are going through. I truly hope your next round of IVF works and that you will have a wonderful little baby and no more pain. I really do.

[butterfly_warrior]

Rachel, we're all allowed our whingy moments Fact is, living with a chronic illness like this is damned hard work and extremely frustrating. I know I tend to sound so positive and upbeat about things... believe me, I have my moments, I just tend to keep them between me and DH. Sometimes I get so good at blocking the pain that I don't realise I'm in trouble until I notice that I'm way more exhausted than normal, and in a really foul mood. It's nice to have people understand what it's like and not pull out the "but you're too young!" line. Man, I HATE that one! It's only slightly less hated than the "just relax" line that gets pulled out when my infertility is discussed.

Anyway, I'm glad that the last breastfeed wasn't as sad as you were expecting. I've got a funny feeling that the sadness may come later. Remember that your son needs a happy, healthy mother, and some times ending the breast feeding relationship earlier than you would like really is for the best... I guess I'm already preparing myself for that time ahead and I'm not even pregnant yet!

Enjoy the relief from the prednisone - don't be a hero and drop too fast! I hope the methotrexate kicks in soon, I do recall well the feelings of frustration when I was having trouble adjusting to my salazopyrin and struggling with side effects and feeling no relief for all the pain I was going through. We found out that my body likes to increase and decrease my doses a little slower than most people. We got there in the end, and I'm sure you will too. I don't know a lot about methotrexate, is that the once a week drug?

Babyjoy, I so know the feeling of wondering which joints are going to bother you next! All the rain in Sydney lately has had me upping my prednisone dosage - something I'd hoped to avoid, but I'm still not fully back on my feet after being in hospital with OHSS after my last egg collection and I just couldn't deal with the difficulties moving on top of all that. Tonight I've got my knees (they always get in on the act!), wrists, fingers and my left foot. Strangely, I find that typing and keeping my hands mobile actually helps - other joints, not so much.

BW

[RachelAlexAndSam]

It's great to have people understand what it's like to have this so young. I always get "have you been to see a naturopath". Sooooo many people have asked me that! Fact is I have, but just to see if there was something I could increase in my diet that may help. My real aim was to keep my inflammation levels relatively low thus avoiding hard core medication for as long as possible. But the person I went to see told me to cut out dairy, wheat, coffee, spicy food and a heap of other stuff. I want to be healthy but I don't want to be miserable either, and I am one of those people that enjoy food. It makes the day easier to cope with if you can look forward to a good coffee at some stage! So i decided to listen to my rheumatologist only. Makes life a lot easier.

Ladies, I too know about the horrid migratory joint pain. My knees would play up one day, then my hip the next, then my shoulders in the middle of the night. And sometimes a really nasty one in the side of my left hand. I'm definitely enjoying being in less pain at the moment. I'm coming off the Pred very slowly. Hopefully the Methotrexate with work wonders.

So BW, do you ever get told to "try not to think about it", referring to your fertility issues? That was one my sister-in-law really hated when she was going through IVF. Some people just have no idea.

[butterfly_warrior]

Can't say I've had that one... but I have had billions of "just relax", quite a few "go on a holiday", just as many stories about women who adopt... and then fall pregnant. The one that REALLY gets to me now is "you'll go through all of this for your first, and then fall by accident for your second". Ok, so since when does pregnancy magically cure my PCOS? My NK cell problem? My husband's pitiful numbers of mutant, sluggish sperm? You're right, people just have no clue!

Do you ever get people telling you to go take glucosamine? Pet hate, that one! The number of times I've had to explain that glucosamine is really only helpful in cases of osteoarthritis, and I've got rheumatoid arthritis... And the fish oil! I developed this while taking fish oil (3g) daily. You think I'd take all these nasty, expensive medications if the fish oil did enough?

Sometimes a good shared vent is so therapeutic!

BW

[Babyjoy]

Hi, me again... sorry for not popping in earlier. I'm glad things went okay Rachel on Wednesday for your last feed. You will remember it fondly I'm sure. What's your dosage for MTX?

Funny thing about typing BW! I find knitting is great to keep my joints moving. Sometimes I can knit for hours without a problem, and other times I can only do 15 minutes and they ache like mad.

BTW, I'm SOOO loving your vent ladies!! I can testify to hearing all of those comments from people. Everyone thinks they're doctors and can offer you a cure. The latest one that cracks me up is "stop eating tomatoes". Sorry, that's never going to happen - I love my home grown tomatoes in salads, and spaghetti sauces, etc. I've also been told to take fish oil and glucosamine, and visit a naturopath, try reiki (whatever that is) and acupuncture. I actually had acupuncture to try and help my joints before I was properly diagnosed and it did absolutely nothing, which was a big disappointment because it had helped me a few years ago with RSI.

BW, Isn't it weird the number of people who have a "friend of a friend" who miraculously fell pregnant after IVF. I think it's rather insensitive to say that to someone going through it all. I cannot imagine the frustration you must be under after all this time. I read some of your journal and was so moved by your strength and resilience. It actually made me feel proud to be a woman... we can face any obstacle put in front of us! You especially! And the 10 commandments were excellent! I actually have a very similar list to do with chronic pain which I'll post shortly.
Hope everyone has a good weekend, only 12 sleeps till Christmas! : )

[Babyjoy]

This is an excerpt from my own website:
"Since my diagnosis for RA I have come to realise that the general public do not understand what it's like to have chronic pain. Many people don't even know what RA is. When I tell people I have arthritis, they assume it is osteoarthritis and straight away tell me to take glucosamine or fish oil or wear copper bangles. Well, it's totally different - it's a auto-immune disease, not something caused by old age or wear 'n' tear on joints. Regardless of what it is, or why I've got it, I think more people in this world should understand and show compassion for people with chronic pain. Therefore I have a list of tips for dealing with people in pain. I found this on the internet and think it is really well written.

1. People with chronic pain seem unreliable (we can't count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up. Pain people need the "rubber time" (flexible) found in South Pacific countries and many aboriginal cultures.

2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

3. Pain can inhibit listening and other communication skills. It's like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don't take it personally, or think that they are stupid.

4. The senses can overload while in pain. For example, noises that wouldn't normally bother you, seem too much.

5. Patience may seem short. We can't wait in a long line; can't wait for a long drawn out conversation.

6. Don't always ask "how are you" unless you are genuinely prepared to listen - it just points attention inward.

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably.

9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g. no place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited compared to the body's ability to feel varieties of discomfort.

12. We may not have a good "reason" for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognised disease. That does not reduce the pain, - it only reduces our ability to give it a label, and to have you believe us.

I can especially relate to numbers 2, 3, 4, 5 and 7. I have delayed pain all the time. It's especially bad if I've had a day out somewhere, swam in the pool or pushed a shopping trolley around a supermarket. Also, I sometimes think I am going deaf because I have trouble hearing people but then later I watch TV and I'm constantly turning it down... it always seems too loud (this drives my husband crazy!) I believe it is sensory overload as my mind is only focused on the pain in my ankles or wrist or wherever.

I have been lucky because I have had great support, understanding and kindness from my husband and family but I still think that we all should be more educated on this subject because one day someone close to us may end up in a similar or worse situation."

[butterfly_warrior]

3, 4, 5, 7 and 11 are the ones that really resonate with me. I always thought I was stark raving mad for not being able to describe where I hurt and how I hurt... until my rheumy, very gently, told me off for having blocked the pain for so long that I could no longer actually be in touch with it. Then, when I found I could describe it to him, I found I was often using contradictory terms to describe the same pain and I thought he'd think of me as a complete fruit loop. But, apparently, it's fairly normal.

Babyjoy, you have really helped me understand myself, my condition and the way it effects me so much better. I'm often not good at verbalising things, so this was immensely helpful. Thank you!

BW

[littlelara]

Hiya,
I have Lupus (yes, it turns out that House was wrong ) and as a result my usual flare presents as RA. I've been on Plaquenil this whole pregnancy, and it's been a life saver.
Best of luck

[Babyjoy]

Babyjoy, you have really helped me understand myself, my condition and the way it effects me so much better. I'm often not good at verbalising things, so this was immensely helpful. Thank you!
BW

No problem! I found it resonated with me so much that I sent it to everyone I know so they could understand what I was going through - especially during the worst times when we're first diagnosed and coming to terms with it all.

I have my last day at work today and then have 3 weeks off - hooray!! This time next week, I'll be on Daydream Island!

[RachelAlexAndSam]

Hi ladies. I was actually talking to my husband this morning about how I was feeling during a flare and trying to describe it to him. I think I might print your list out Babyjoy and put it on the fridge for him to look at. Number 7 is so true for me. Just getting off the couch can be a major thing for me and I will put off getting a drink of water, or going to the toilet because I know it's going to hurt so much when I try and get up. I often look at other people and wonder if they realise how lucky they are to be walking around at a normal pace or carrying bags, or all those things you take for granted. I am sometimes so completely absorbed in this disease it occupies all my thoughts!!

Oh and the glucosamine!!!!! The naturopath I went to see actually gave me glucosamine and that's what really turned me away from her. I had only been recently diagnosed but even I knew it was useless for RA.

So it's been 2 days of absolutely no breastfeeding and I am like Pamela Anderson on steroids. Looks great, but so incredibly painful! What a waste.......Had a big chat with some friends who commented that I was walking around so much better and seemed much happier. Makes me realise that i made the right decision. I am definitely a better mum with less pain. I have just had a really lovely evening with my 3 year old girl Alex, eating pizza and watching Funniest Home Videos (wouldn't normally watch it of course!) while my husband is at a Christmas Party. A few weeks ago I would have been doing my best to get her into bed early so I could collapse (literally) on the couch and do nothing. Huge improvement.

Babyjoy, have a great holiday on Daydream. Pamper yourself with a massage or 2!

BW, my sister-in-law got the "just relax" one all the time. When people say that, it just really highlights that they have no idea what you're going through. If they did, they would realise that trying to be relaxed about something like that is difficult, but made even harder when someone tells you to relax. Useless advice really....

I'm off to bed. Sweet dreams everyone.

Rachel

[Babyjoy]

Hello everyone... it's been a while but I hope you all had a lovely Christmas and New Year break.
I've just popped back on the forum because ... well... I'm feeling sorry for myself. My RA is flaring up again in my hands, knees and ankles, and it's made me depressed. I need something (or someone) to shake me out of the doldrums. One of my New Year resolutions this year was to not work so hard. I worked two jobs last year (as well as trying to be a great mum and wife) and I nearly burnt out. So this year I need to take it easy as we're TTC and I don't want any extra stress to cause me to have more RA problems. But here I am, only a few weeks back at work and I'm feeling so tense again!

I have been wondering how you other ladies with RA are coping... it really helps to talk to others in the same situation.

[littlelara]

Hi all, I have just had a bub, but started to flare a few months into my preg so my rheumatologist put me on Plaquenil. Once it kicked in it worked a treat, but just last wk I had the worst flare I've had in a long time so now I'm back on cortisone as well as the plaquenil. Not ideal, but at least I can get around and pick up my baby now
Thing is, my rheum doesn't seem to think there are any issues with bfing while on the meds.
Have you heard otherwise?
Also, I've taken tissue salts (brand is Martin & Pleasance, Pherr Phos) and found they can really help too.
I haven't read through all the posts so hope I haven't just repeated someone else's advice, but either way I hope you're all getting better through.
It's a bugger of an illness

[Babyjoy]

Hi Lara!
I'm afraid I am totally unfamiliar with the meds you are taking and the tissue salts ... what do they do? Is that like Epsom salts? I had an elderly relative tell me to drink Epsom salts on a regular basis (YUCK!) to help with RA.
I am starting to feel as though I'm not being given alternative options by my rheumy. He just says "you need to take drug X" and I say "OK". But then I read about all the other types of meds that pregnant and breastfeeding women are taking and I think, why can't I take them too? If your rheumy says your drugs are okay, then you just have to trust him I suppose.
It's funny that your RA didn't go into remission during pregnancy like most women. Mine didn't either - I became completely incapacitated during pregnancy until I was put on prednisone.
My flares are becoming more frequent and more intense each week, so I'm praying I get pregnant and go into remission soon!! Got to keep thinking positive!!

[butterfly_warrior]

I was on plaquenil for a while - it was great while it worked, but I only got around 12 months from it. I'm told it's not safe during pregnancy, too.

Babyjoy, it's stories like yours that really make me appreciate just how wonderful my rheumy is. From the start it's been a team effort. He gives me all the info on the drugs, and helps me decide which one I'm going to use. He gives me instructions on how to vary doses and then sends me away to manage my pain within those instructions. None of this "you will take XX amount of YY drug and I'll see you in a few months".

Quick summary of the drug options I was given - slow acting disease modifying drugs were plaquenil, salazopyrin and methotrexate. Of those, I'm told that salazopyrin is the only one that's safe during pregnancy. I haven't looked at the breast feeding aspect yet - I'll worry about that when I can get pregnant and stay pregnant!

When it comes to quick-acting pain-relief type things - prednisone is safe in pregnancy, and so is paracetamol/codeine. NSAIDs of all types are pretty much out (ibuprofen, naprosyn, mobic, etc). Again, unsure about the breast feeding aspect of those.

If anyone's in Sydney and wants the details of a fantastic rheumy - let me know, I'm happy to pass them on. He has rooms in Castle Hill and Concord, from memory.

BW