Menopause, uncertainty and pain in 5 places

Mat48

Hi All,

Not coping well tonight. I had a great day (or so I thought) after having a pelvic scan this morning and finding that all was normal and working out that I'm probably romping through my menopause relatively well.

But now evening is here and the lurking pains of the day have turned me almost into a solid lump of pain. My right forefinger hurts again, my left knee is sore when I stand up or walk about, my right foot is painful on the sole and slightly swollen and my left shoulder is hellish down to the elbow - can't lift anything. That's more or less every limb and also - and this is brand new for me- i have a horrible pain right in the middle of my back. Never had this before - only ever had lower back pain and that not often.

I'm starting to fear, from everything I read on the various forums, that I'll never be diagnosed or helped or believed. Of course I really hope this is simply menopausal arthritis but I hate the thought of putting everything down to hormonal fluctuations (or even worse the doctors doing so) only to find it's been or has morphed into RA or OA or PA or PR and irreparable damage has taken place.

How can this kind of pain be benign - it's simply not viable is it?! I admit that I haven't taken any pain meds today because i usually just stick to Amitriptyline (10mg) plus codeine (15mgs) and if bad I take a Paracetamol (500mg) as well before bedtime. But tonight I feel a mess and just a bundle of anxieties. I've an exhibition in three weeks and should be working for it as I'm very behind but my right hand/ forefinger (I'm RH) feels too pained and stiff to even try it - plus I've two teens and a dog and OH on a nightshift.

Am seeing my GP on Thursday and rheumy in November and am not diagnosed yet and not on any other medication than stuff mentioned. I'm really scared it will be decided that there's nothing wrong and drop me from the list as pain isn't visible. How do I go on with all this not knowing do you think? Mat :???:

valval

hi it is awfull the not knowing and being convinced that they will tell you it all in your head well it is not it hurts and you have swelling and that not in head take pictures down load the pain map on here somewhere and keep pain diary you will get tols what it is one day but do not hold your breath it very hard to diagnose so as long as they are treatng you it will be ok most treatments the same so do not worry about that good luck val

traluvie

Hi Mat,

Welcome to the forum.
Sorry to hear that some of the stories on her have kind of worried you..
Many people can go years without diagnosis i agree and some don't,Many people lead a fairly normal life, others don't, Some tablets work for some and not for orthers...How it plans out for ourselves no1 knows..The best thing is to take each day as it comes, worrying about what may be will not help the situation.Talking to your Gp about different pain relief may be an option see if you can find something more suitable..I have not got a diagnosis but have started hydroxychloroquine (disease modifying drug for inflammatory arthritis) been on it for 6 months now and can say i do feel the benfits from it, i also have regular steroid injections along with tramadol and diclofenal..This has become to be the best cocktail of medicine for me and i can honestly say i do feel better than i was and i would rather be how i am now than what i was 6 months ago..I have only been familar with arthur for 12 months, i have 2 children and i know how hard it can be...
We are a good bunch on here..Although it may seem sad what you read but we do have some good old laughs too..
Thinking of you.Hope you feel a bit better soon..

dreamdaisy

Arthritis causes pain. That is what it does. Pain is designed as an alarm that summat is wrong, somewhere, and that steps have to be taken. There are around 200 forms of inflammatory arthritis and narrowing diagnosis can take time. You are obviously unused to any level of pain and discomfort, and yes, it is monumentally UNFAIR but this is what arthritis does.

Arthritis has ensured that I have had to re-think, adjust, alter and change everything I do. It can take time to diagnose, time to treat, and a deal of time to accept. Go easy on yourself, you are still very new to this, none of us can say how your arthritis will develop, everyone is different in how they are affected, how they react to the meds and in how they cope. DD

Mat48

Thanks. I have been tried on diclofenac and it made my tummy sore and also gave me fluid retention so I quit that. Up until now my recipe has been a dram of whisky at 9pm, an Amitriptyline at 9.30 and I got the GP to prescribe me 15 mg tabs of codeine and seperate Paracetamol (co-codimol combined) but I have an hour or so to wait before I can hit my recipe.

Yes I'm new to this DD. I'm not entirely new to acute pain or chronic pain having given birth three times and suffered chronic eczema all my life until 3 years ago - also gallstones (playing up tonight). But it's the shock of finding it arriving in different places so quickly that has taken me by surprise - and all over the place tonight.

I have been feeling unwell in a non-specific low aching way for a few days but assumed it was pre-menstrual as I had first period in 2 years a month ago. Now I know from the pelvic scan that I'm not pre-menstrual and all is pain and stiffness I'm wondering if it isn't all part of the same thing and perhaps this is my first proper flare. There's not much symmetry and I never know from one hour to the next which bit will hurt but so far it's only been in a couple of joints - tonight is a whole new ball game and it's scaring me. I didn't mean to sound critical of this forum at all I think it's wonderful and the NRAS one was far more alarming but then all this is really alarming and there's no way round it so it's good to feel I'm not alone at least. I just get sad sometimes when I read of people's plights that's all.

I was put on Sulphasalazine initially but had a bad reaction (skin) and then had a kenalog jab which was good for taking away the small amount of swelling and stiffness but the pain in my hands got much worse after it. Since then I'm just waiting and was told that it would be hard to diagnose unless I was in flare mode but not sure what that is really - is it this I wonder? I have had a few weeks pain free after the period arrived but now it's all come rolling back with a vengeance and no one in my household seems aware of this so I'm just in a huddle feeling sorry for myself adn waiting until I can hit the whisky in ten minutes! Mat x

traluvie

Iknow what you mean about attcking quickly..I was scared like you..WQhat started in my finger has spread to many joints, how quickly it progressed was what shocked me and the intensity of the pain, but as i said in my earlier post the meds are helping..I am on a good cocktail of them but it is helping so thats good for me lol..
A flare i think differs with each person, i ams till learning to notice the signs and symptoms, i believe i am going through one myself now as i am extremly tired, weak, heavy and i can feel my joints throbbing, i believe in the next few days most of my joints will be very sore and painful, but then i might be surprised lol..Arthur has a weird way of working, and has many surprises..It is a learning experience, but it will get easier as you learn to cope with change and everyday...
Does sound like you need to chat with doctor about meds, see if they can help you more..

Mat48

Thanks Tracy. I am torn between wanting to appear the boss of my situ because he's not really the sympathetic type, although perfectly nice and professional - and wanting to weep and tell him that I've had enough now and please give me steroids he's always offering. I don't want to mask the pain for next time I see the rheumy. Also last time the Kenalog made me depressed and I put on weight and I've been struggling so hard to lose weight that it would be counterproductive to my state of mind if I started piling it back on I feel. But my resolve is rapidly dying and I've got a big exhibition to finish work for and install in three weeks time so really need my hands and to be well enough to fly down and set the show up.

Ditto with the sleep - it's taken me an age to learn to sleep after 2 years insomnia (both parents died suddenly and unexpectedly in past few years) and I'm reluctant to risk going back to insomnia after a few weeks of okay sleep (allowing for wakes when joints lock and need excruciating unlock!). But I want to find out the results of my anti-ccp test (taken over 2 months ago) and see what my ESR is doing these days and generally keep myself in his radar as I haven't seen him for months now and last time pain was having a brief break! Hmm I think I'll just be me on Thursday morning and he can take me as he finds me and put up with it whatever! Mat x

traluvie

Sounds to me that if you are struggling then may be worth taking up the offer of steroids..I know alot of people get great benefit from them, i know i do..I was really reluctant to take them but when i noticed the difference i decided i would rather take the steroids and feel bit better than feeling the way i was...It is a choice you can make and if you do feel no benefit then there is no need to do it again..

I have been to my rheumy in agony but had no visible swelling, and bloods were ok, i was lucky my rheumy believed something wasn't right and investigated further..I hardly have no swelling now due to steroids and inflammatories but the pain is still very real..

Hows the whisky? Hit the spot yet lol..

Mat48

Oh hell's bells I saw that I've only got a weird mix of heather honey and Scotch and decided against it because I've been trying to avoid sugar for 2 days and it's kick started the weight loss again.

Losing weight is my lemonade (if you get lemons, make lemonade) just now because I was horribly overweight when all this kicked off and with a family history of type 2 diabetes and gout I really knew I felt I had to act quickly. So I quit gluten and my gut thrived, then I lost 2 stone slowly and recently had levelled so quit dairy to kick start weight loss again - which meant quitting caffeine because coffee and tea without milk are yiuck - then started sleeping and losing weight again slowly.

Now weight loss has stopped still again so thought I'd cut out all sugar and red meat and found the latter easy but not eating fruit etc is proving quite a tough call. But this morning found I was down another pound so worth it after all! Wondering if I should double the Amitriptyline to 20mg but already got codeine and paracetamol smiling at me from the bedside! God I must move my body is in meltdown now and I'm heading for the pain meds fast. Think I'll go for the steroids on Thursday - Prednis... something is meant to be good have you tried it? Mat