Evening All - New Member NE - Do my problems sound farmiliar

icewater · 15. Feb 2016, 16:41

Good Evening all,

I have joined as I am hopefully going to speak to many others who may have felt the way I do, as I feel quite alone right now. Waiting for my rheumatology referral from my Dr.
Symptoms started after giving birth 3 years ago and it was very traumatic. I suffer with tiredness, confusion, worsening IBS, interrupted sleep and most importantly, extremely painful lower back and hips, knees etc, and most importantly having to give up exercise (I was a keen runner years ago)

None of my blood markers came back from Dr's with RA, OA, or anything wrong with iron or ferratin levels. I feel like the only person who believes me is the Dr and my Mother, everyone else thinks I'm making it up but the symptoms are real and the pain takes my breath away at times, even when sitting. I used to have to get up from my desk and go to the loo at work to hide the pain as I did not want my employer to think bad of me, this was a temporary role and didn't want to jeopardise my chances of becoming permanent.

I am currently taking tramadol, naproxen for pain and beta blockers for my palpitations and panic at night, as I get annoyed with myself and panic when in pain in bed and can't sleep (vicious circle)

What do I need to ask for at the referral, CT scan or MRI etc? I did request these 2 years ago but they did not take me seriously until now...

I'm not sure if it is because I have been out of a job for 4 weeks that my symptoms are worsening, I feel quite low, that won't be helping as working gave me focus to get up, get showered, put make up on and forget the pain (as much as physically possible)

I am now looking for work and I am really worried that I can't pay the bills as waiting on p/t office jobs isn't paying off, I'm applying for loads and I can't apply for anything like cleaning as I struggle to keep my own house to my high standard as it is, which is upsetting.

Hope you all understand I feel really poo often, like today I have had my worst day in months and I felt I needed to reach out!

PS I tried anti depressants but they made me feel shaky and anxious after 6 weeks, I don't feel they help me I feel talking is the therapy for me.

Thanks sorry for the rant! Any help, advice, guidance for my appointment, what to ask etc would be great.

[Edited by Mod JK - and re-edited by Mod Yx to replace the symptoms unfortunately deleted, now if we could do that in real life, I have a number of symptoms I'd willingly delete!]

dreamdaisy · 16. Feb 2016, 04:01

Hello, it's nice to meet you but I am sorry you have had to find us. It is not unknown for pregnancy and birth to trigger the onset of an auto-immune condition (of which there are around 300 kinds) so it is good that your GP has referred you to a rheumatologist because they know far more about these matters.

I have psoriatic arthritis (PsA) which is one of the sero-negative forms i.e. rheumatoid factor is not present in my bloods. My inflammatory markers were always high so that gave the game away that there was something amiss; I am fortunate in that I don't have a lot of psoriasis. The joint damage from that has led to OA in some useful places so I have a creaky foot in both camps. I am not surprised you are struggling at the moment, there is the stress of knowing something is not right, money troubles, working or not working, a no-doubt very active three year old to cope with and all your body is doing is rebelling and failing you which it has never done before. What barefaced cheek.

I wonder why you didn't try another anti-depressant when you didn't get on with what you were given, there are many available. I take a low daily dose, I have done for five years now and it does help me cope with the daily challenges I face in dealing with pain and lack of movement. Not once has it occurred to me to blame myself for the trouble I'm in but I've been affected by auto-immune troubles since birth so that may be why. It must be harder for you coming at this from a healthy background: I often think that experiencing good health is a curse because it does not prepare you in any way, shape or form when things go wrong.

When you see the rheumatologist he will tell you what he wants done: initially it may be more blood tests and Xrays. It is a sensible idea to start keeping short daily diary of what hurts and where, tiredness levels, what helps and what exacerbates etc. so he gets a better overall picture of what is happening to you. Ensure it doesn't get too wordy, presenting a novel won't go down well

I hope you are able to take someone with you because an extra pair of ears can be useful, there will be a lot for you to take in so it helps having feedback from another.

I wish you well. DD

icewater · 16. Feb 2016, 06:39

Good Morning, what a lovely set of messages to wake up to, thank you.

I had absolutely no idea there were so many forms of arthritis, I thought OA and RA were the only 2, didn't realise any auto-immune conditions weren't marked in blood either, this is usually what GP's tell you anyway, mines fab mind after pushing this long.

I really don't want to get fobbed off with 'fibromyalgia' as I have heard lots of people been getting diagnosed with that left right and centre as there is no set test yet and it's kind of a guessing game. I want to make sure what ever is wrong is definitely diagnosed correctly.

Re: anti-depressants, I seem to be completely intolerant, I took them a short while at 18, 22, and again at 26 but each time (even though I tried different ones for 6-8 weeks) I always felt better off them. They make me so sweaty that washing up I am dripping all over, and so anxious that I cried every time I had to speak to anyone. I guess they work for some people and not for others hey, talking helps me (and working/social side of work) so I am in the right place

.. Just need to find a new job

Thank you I will take it all on board xx

dreamdaisy · 17. Feb 2016, 03:19

Those who don't have any form of arthritis tend to think that and it's reasonable enough. There are around ten million arthritics in the UK and the majority have OA, a good few thousand RA and the rest of us a mixture of all the others but who's going to know that?

Right, anti-deps don't suit you so what about a course of CBT? (Cognitive Behaviour Therapy.) Your GP should be able to refer you to someone (at least I think he can). It can be very helpful, for some it's better than counselling.

A word of caution, please don't say too often on here that fibro is a 'fobbing off' condition, many of us on here have it (me too, my rheumatologist had no hesitation in diagnosing it which took me completely by surprise) ) and at times it causes as many troubles as my PsA and OA. Sweaty? Oh yes, all the time, I guess it's a side-effect of the meds and /or the fibro, it's gone on for years and I am an old-hand at coping with it. I wrap my pillow in a bath towel (have done for years, can't sleep on a bare pillow now!) and always have a fan in my bag (together with a dry flannel for the really drippy moments).

Work is a difficult area for those of us who want to / need to. Employers naturally want reliable employees and, due to our conditions, we cannot be that. I was fortunate in that I was self-employed so could tailor things to suit me, but even so it all became too much (especially after my double carpal tunnel op) and the relief of retiring in my early 50s was immense. The lack of that pressure initially helped to ease my arthritis but it soon realised it was being tricked and rushed back.

DD

icewater · 17. Feb 2016, 04:32

dreamdaisy wrote:

A word of caution, please don't say too often on here that fibro is a 'fobbing off' condition, many of us on here have it (me too, my rheumatologist had no hesitation in diagnosing it which took me completely by surprise) ) and at times it causes as many troubles as my PsA and OA. Sweaty? Oh yes, all the time, I guess it's a side-effect of the meds and /or the fibro, it's gone on for years and I am an old-hand at coping with it. I wrap my pillow in a bath towel (have done for years, can't sleep on a bare pillow now!) and always have a fan in my bag (together with a dry flannel for the really drippy moments).

Sorry for the misunderstanding, I am aware Fibromyalgia is a real condition, my Mother suffers from it and it is awful, what I was referring to though is the fact that the symptoms can easily be faked as there is no test for it yet. I have read reports from rhuemys that warn of this kind of thing, I have seen this in my previous employment years ago, 7 people were diagnosed by their GP with fybro and later the rhumey said this was not the case, only 2 were suffering from fybro, the rest were not suffering with anything at all, this was to aid their case in an accident claim, it was like a domino effect one employee after the other.

I apologise if I seemed to offend you, that was not my intention, however I maybe should have explained further. The kind of people above will ruin it for those who really are suffering unfortunately.

stickywicket · 17. Feb 2016, 11:09

Hi there. I'm a bit late coming to this so I'll try not to duplicate anything that the others have written.

I started with Stills Disease (a form of RA) when I was 15 and boy did I flare after both my sons were born

It is, indeed, not unusual to find people start with an auto-immune arthritis after giving birth but that doesn't mean to say that all who start with arthritis after giving birth start with an auto-immune type. If only it were that simple :roll:

I don't think your rheumatologist will diagnose fibro unless he / she feels you have it. According to ARUK “We now know that fibromyalgia isn't linked to inflammatory or degenerative arthritis, even though the symptoms may sometimes be very similar.” http://tinyurl.com/lbmctfk You are more likely to come away with a general 'Inflammatory Arthritis' diagnosis. Sometimes people feel that this is a 'fob off' but it's not. It means they know you have some form of inflammatory arthritis but not which kind. That might reveal itself in time but, if not, the meds are the same anyway.

You might simply be told you have OA. You write “None of my blood markers came back from Dr's with RA, OA, or anything wrong with iron or ferratin levels.” but I'm fairly sure there's no blood test for OA. Your doc will have just been trying to rule out (or in) some of the simpler explanations and has now done the right thing by referring you to a rheumatologist. Even RA can, very occasionally, give a negative blood test.

If there are any auto-immune diseases in your family (Not just 'arthritic' ones but also asthma, eczema, coeliac and many others) do tell your rheumatologist as auto-immune diseases usually have both a genetic factor and an (unknown) environmental one. And, as has been said, keep a diary of symptoms and photos of any swelling. They can be very helpful towards diagnosis.

Good luck! Let's know how you get on.

To All Mods - Please would you delete some of my symptoms too - not all or there'd be nothing left of me

barbara12 · 17. Feb 2016, 11:29

Hello and a warm welcome form me,the others have given you so much advice, so I cant really add to it, but I do wish you well, and the best thing I learned form this forum is to make sure you are heard when in an appointment..I am still trying to get a proper diagnosis, they keep changing there minds , so you are not on your own..

dreamdaisy · 17. Feb 2016, 13:32

Oh heck, I am sorry, I didn't take offense but I wasn't aware that you know what you know: I sincerely apologise.

Many moons ago I met one woman with fibro but without arthritis, I didn't understand it but at the time I was arthritis-free: we learn what we need to learn when we need to learn it, yes? Oddly her only daughter was born with hip dysplasia.

My first diagnosis (from the second rheumatologist I saw) was unspecified inflammatory auto-immune arthritis and that was in 2002, it wasn't until 2006 that pustular psoriasis appeared on my soles and palms that the medical 'penny' dropped: the label changed but the meds remained the same. We can be very difficult to diagnose but, if the rheumatologist decides it's OA that is troubling you, you will be referred to your GP because they deal with that. Keep your diary, take someone with you and I hope the appointment is the beginning of your finding some answers to what's going on. DD

Boomer13 · 18. Feb 2016, 11:39

Hello, I think I understand the issue with a fibromyalgia diagnosis. If you are diagnosed by a GP you may not get a referral to a rheumatologist to be assessed for another form of inflammatory arthritis. Then, you can end up in a kind of limbo of unsatisfactory treatments with the underlying problem remaining untreated. This happened to me. My GP diagnosed fibromyalgia and said I didn't need referral to rheumatology as fibro is best treated by a GP. I went along with this for a while (far too long as I trusted this GP immensely) but I just kept getting worse with more joint pain and, more joints involved with every flare up. He truly did not understand the level of pain I was in. When I did finally rebel and go to a different GP, she referred me right away to a rheumatologist. I then waited another year for an appointment and was diagnosed right away with an inflammatory joint arthritis although it was unclear which one (sorry for the long story but it has been a very long one in reality). I have been diagnosed with psoriatic arthritis and spondylitis (inflammation/arthritis of the spine) but it was seven years after my problems began. I have been on proper treatments for three or four years now but because of the delays, I have some joint damage. I do have a diagnosis of fibro now too which my rheumatologist says is a common secondary diagnosis to people with arthritis.

It would definitely be a good idea to receive assessment from a rheumatologist, mine was able to see/feel subtle inflammation in my joints that the GP did not notice. Fibro is also best diagnosed by a rheumatologist after they have ruled out other inflammatory conditions.

Best wishes, I hope you get a rheumatology appointment soon.

Anna

Evening All - New Member NE - Do my problems sound farmiliar

Comments

Categories