Just wanted to have a moan!!!!!

poppy30

Have been popping onto the forum but haven't posted for a while as I was worried that once I started pouring out my troubles I wouldn't be able to stop!!!!

Anyway, really need to share my story with folks who know what arthur is like as I want to give my ever supportive fiance a break!

I have PA and was taking MTX and Humira with fab results. Just over 3 months ago I stopped the meds as we want to start a family. Am now in absolute agony in my toes, right knee, hips, back, right wrist, left elbow, neck.... thinks that's them all :roll: !! To top it off, over the past two weeks I've started getting shooting pain in my lower back and when I called my Rheumy in despair on New Years Eve he said that it sounds like I have sciatica as well!! :x Have been told to stock up on ibuprofen and start trying for a baby ASAP! Without wanting to be too graphic.... baby-making is the last thing I feel like doing right now! :oops: :oops: :oops: Sleeping has become extremely difficult as I can't seem to find a position that doesn't hurt and lack of sleep and chronic pain is leaving me very tearful....

Really sorry for the long winded post.... this is why I haven't written before as I was worried that once I started typing I wouldn't be able to stop! I'm having a big cry as I type this but I am feeling better for getting it off my chest so thanks for reading!!!

Just hoping that someone out there might be able to give me some top tips for coping (practical and emotional!) or at least tell me that it will be worth it!!!!!!!

Sorry again for rambling :oops: but thank you so much for listening.

Poppy x

Wonkylegs

HI POppy and well done on putting things so clearly! I really remember what that feeling was like when we were in that situation.

The family decision is a really tough one to make. There isn't a right answer for anyone, It is a balancing act, but one that is almost impossible to bear at the time when pain is all you can think about. Also knowing that the arthritis being active is going to make the chances of conceiving more difficult isn't an easy pill to swallow.

have you seen a gynaecologist for advice on the best way forward for you? I only suggest this as we were helped enormously by my gynaecologist on the interaction of the inflammation and conception, and to be honest my rheumy was fairly clueless on the pregnancy side of things. jsut a thought.

I don't have all the answers, but I know that when we were trying, we became quite inventive in the use of pillows!!!!! :shock: It is amazing how propping up certain bits can help with pain management. Alsobeing really honest with each other about what is and isn't working - that way you can relax more knowing that your partner is aware of what might hurt you most.

There is always laughter we used to dissolve into fits of laughter at most inappropriate moments, but once you can have a good laugh with each other that is half the battle!

I have had problems with my lower back and sciatica-like
pains. My GP referred me for physiotherapy which really helped, and I keep up the exercises to protect myself from it happening again. Might be worth a try for you.

Have you tried the relaxation CD that Arthritis care do? I have a cassette tape from an AC course and it is very helpful when sleep is elusive. Also I have been advised by the physiotherapy department to use lavendar essential oil to help me sleep. You'd have to check it was ok as you are TTC but I do know that they use Lavender essential oil on babies & she assured me it was one of the safer essential oils.

hope some of that helps.

Thinking of you
Wonkylegs xxxxxxx

ktl297

Hi Poppy,

I am so sorry you are having such a bad time... I can't really relate to the whole trying to get pregnant bit but I have PA too and when I am having a flare up I know how bad it can get. I echo what wonkylegs said about talking to your partner and trying cushions/pillows to prop you up when you're "baby making". I am sure you've been told that pregnancy usually prompts remission of the PA so I hope it works out that way for you. Keep talking to your Dr's and I hope you're feeling better soon... By the way my hubby often gives me a lovely massage at bedtime which can ease some of the aches and pains. He bought a handheld massager (not sure I can give the details here but it was advertised on TV before Christmas) for about £5 which is great and stops his hands getting too tired!

Hope you're feeling better soon!
KT

frogmorton

Oh Poppy
Poor old you This sounds really miserable
I don't know what to say either, but you do have all my sympathy. I'm sure you've treied all the obvious from warm baths to ice packs etc. I think , if I were you, I'd try to get an earlier apt at the rheumy and discuss your options - maybe there are meds out there that no-one has thought of which might just take the edge off it?
I do so hope so.
Other than than that I just wish you well.
Take care
Toni xx

fayrose

Ooooh poor you Poppy.

Wonky and the others have some good suggestions and info for you.

I can't imagine how awful it is for you youngsters starting out and wanting a family. I just want to give you a BIG HUG and say, keep fighting the illness and keep trying.

Fay xxx

scorpiojackie

Hello Poppy,

Hope today hasn't been to painful for you. I see that you have been given lots of hopefully useful & helpful suggestions.

I know it is possible to take a small amount of steroids (under 7.5mg I think) when you are pregnant, without harm to the baby as it is processed in the umbilicus.
In fact it is steroids that they give to prem baby's to help with the development of their lungs etc. but I am unsure when TTC.
I don't know what your feelings would be on this, but if things become too bad for you, it may be something you could talk over with your Gp/Gyny.

Take care
Jackie

ldouglas

Hi Poppy,

I too have PA, its been about 6 years now since diagnosed.

I havent been on any of the "strong" DMARDs that you have been on and I can imagine it must be pretty traumatic to your body having to come off these to try and get pregnant.

We started TTC over a year ago. I was on sulfasalazine at the time, but ended up on Prednisolone (only 10% of the dose crosses the placenta so not harmful to baby). Anyway cut a long story short I am now on Azathioprine, still on Prednisolone, and 20 weeks pregnant.

When we conceived I had been taking Ibuprofen 400mg four times daily (managed to stop these when found out I was pregnant - painful, but not so much now), Paracetamol 2 tablets four times daily, Prednisolone 10mg, and had just started my Azathioprine. A lot of people on here feel that Ibuprofen affects fertility etc, but my thinking was that being in so much pain was affecting TTC so much, that it really didnt matter whether I was fertile or not if you get what I mean!!! I have to say even with all those meds I was still in a fair bit of pain and discomfort.

We actually started using a "ovulation test kit" - the type where you pee on a stick for a few days each cycle to tell when you ovulate. It made the whole process feel pretty mechanical, but took a lot of the guess work out of trying to work out the best days for TTC (vital when in pain as every night is just NOT an option!!! :oops: :oops: ), and took away a lot of the stress I was feeling that because I wasnt feeling up to it I wasn't getting pregnant. It worked on the second month of using.

I think the strain people usually feel when TTC is just magnified when you are struggling with pain, as there is always a voice inside you wondering if you are doing the right thing, worrying that you are causing irreversible damage to your joints, worrying if you are being unfair in wanting one thing so much and putting everything else on hold. It's also a strain having to keep pretending it's a flare cos you dont want to tell people that you have stopped taking medication and made your arthritis worse incase they don't understand.

Coming on this forum to vent off every now and then definately helps. Keep an open mind about taking medication too, I got worked up about taking ibuprofen after reading some posts, but at the end of the day if it makes things easier for you, its only going to increase your chances of falling pregnant. You will probably find, as I did, its so much easier to stop meds when you know you are actually pregnant, despite the pain you end up in, its definately worth it. Try to stay relaxed, and best of luck, got my fingers crossed for you.

Lesley

P.S. It's 100% worth it when you see the first scan, and realise there really IS a baby there!!!

poppy30

Just wanted to say a big thank you for your replies!
No real change in the pain but I have spoken to my boss at work who was really supportive and has suggested I'm flexible with my working hours which will be a help. Also have arranged a GP appointment tomorrow to have a chat about physio and to get her thoughts.... I think sometimes I just need a good moan to kick start me into action!

Am just writing a quick post today as I feel pretty sleepy and am hoping to drop off soon!! Thanks again!

Poppy x x

frogmorton

Well done Poppy! You've taken action, which is positive
I hope you get on alright and had a good sleep
Toni x

poppy30

Just thought I'd post a quick update........

Went to see my GP today who was really supportive. She went through some back exercises with me and prescribed diclofenac so hopefully I'll be feeling the benefit very soon!!!
Did manage to drag myself out of bed a little earlier today but when I got into work all of our computers had broken down :x so don't think I'll be pushing myself for an early start tomorrow!!

Feeling much more positive now so thanks again for your support!

Poppy x

redpoppy

hi poppy,i was thinking about you the other day as i havent seen you post for a while.i wonderd how you were getting on.sorry to hear about your pain.im glad you feel more posative now.

sweetpea

Hey Poppy. Sorry to hear that you are experiencing a flare. I've been posting on the pregnancy and arthritis thread as I am in a very similiar position-pa, ttc and a bad flare! What I am beginning to learn over the past 7 months of this flare is that you have to think about yourself at the mo...having a flare generally makes it harder to conceive: max up on the diclofenac, see if you can get a steroid jab, think how much pain you can put up with and let the rheumy know so they can help you control the flare (you can take sulfasalazine and azathioprine in pregnancy). I've had to take some time off from teaching for a while to get better which has definitely helped. You sound positive and you're doing the right things. Someone suggested ovulation tests which are fab at pinpointing your fertile time (you can buy these much, much cheaper online that the clearblue ones-I'll send you a link if you want!). I hope that the diclofenac is working and you're feeling a little better. Take care,
Lisa x