Not quite sure...

sjohns015

Hello,

I have been reading the forums for a couple of weeks now and I have to say that I have laughed, cried, and well, just felt a huge amount of empathy for so many of you. I just wanted to say a big thank you for helping me keep my spirits up - even though you didn't know you were

I haven't been diagnosed with any form of arthritis but 2 weeks ago had some blood taken to test FBC, ESR, CRP, RF and Auto-immune anti-bodies (I've googled them now and know what they're for) I'm still awaiting the results and have no idea what's going to happen. The pain I have been experiencing in my joints (which seems to be most of them) has gradually got worse and I am now struggling to cope with it (I have 3 children 7, 5 and 2) so I have another appt tomorrow morning to beg for some strong pain relief.

I know none of you know me and I feel like a bit of a fraud writing on here without having been diagnosed as a fellow sufferer of arthritis. I am also really sorry for what may turn out to be a pretty long post but I have tried to write this out so many times and have today decided to just go for it... I haven't gone into any major details about the symptoms I'm experiencing as I feel I would cry at seeing them all written down. However, I am completely aware of my own physical limitations (or was, I should say) and thought until about a month ago that I have a high pain threshold (HA!) I prolapsed a lumber disc 13 years ago and after a discectomy, an epidural and a stay at a rehab centre I developed something called segmental myoclonus of the spine (in 1998) - basically a jerking action which originates from the waist (for me anyhow) but depending on my posture at the time affects the type of jerking motion which results (if you know what I mean?) Apparently caused through the trauma to my spinal column. I was initially told it was psychosomatic and for the first 6 months felt like I was going out of my mind - until I saw a neurologist...phew! It took me a very long time to accept it all and I still now feel very self conscious when having a bad day in public. I was unable to carry on with the career I had chosen and have had to deal with varying degrees of pain from the waist down almost every day since then. In the long run, I just kind of got on with it really.

I guess I'm pretty scared... For the last year or so I have been suffering with extremely painful feet when I get up from sitting etc and always just put it down to referred pain from my back... then my knees started to feel stiff and painful and now it seems as though almost every joint in my body is somehow afflicted one way or another (especially right now as I write this!) I am worried that I may have ignored the early onset of symptoms for "whatever it is". I always just put everything I was feeling down to my back injury, I used to joke that the reason why I would often fall asleep in the afternoons (or just feel really sluggish) was because, "I'm carrying an injury don't you know?..."

I have no idea how you all do it! I often find myself fighting back the tears and feel extremely inadequate as a wife and Mum. I dread having to go through all the tests and the stress of waiting for results.... I've even been rehearsing what I'm going to say to the Doc tomorrow so that I can try to get him to realise just how rotten I'm feeling in the space of ten minutes.

I have come to one decision though, and I was kind of wondering what you think? Whatever the results of my blood tests I am going to ask to be referred to a rheumatologist (even if the bloods don't show anything) as I need some answers as to what is causing all of this pain - I feel as though I am struggling to get through the day at the moment - I knew why before and I think the not knowing adds to the worry. I just don't want to sound rude when speaking to the Doctor, after all they're the experts (or so they claim... )

Anyway, if you've got this far, thank you so much for just taking the time to read my post. I've been feeling pretty nervous about doing this as I know that so many of you cope with so much more and I still haven't had any form of diagnosis yet.... I'd cross my fingers for a good outcome but seem to be having some trouble with that at the mo'

Take care all,

Sarah

joanlawson

Hi Sarah

Welcome to the forum. I am so sorry to hear that you are experiencing so much pain at the moment. With three young children to care for, it must be very difficult for you.

I hope you can get some better pain relief tomorrow, and I certainly think you should ask for a referral. You need to understand as much as possible about your condition in order to be able to see your way forward.

There are many people on this site who will be able to support you, and also you can ask the helpline for information and advice.

Joan

angel1

Sarah hello,

First, welcome to the forum. You will find all the support, and advice you need on here.

I was full of admiration for you reading your post. You have struggled for so long, and with three little ones.

I imagine you already feel better for having written everything down. You obvously need immediate help with pain relief, and hopefully you will get that when you see your GP. Your attitude is the right one with regards to taking things further. Hold on to that! If necessary, keep banging on til you get what you need. Let us know how you get on......Ange.

elnafinn

Dear Sarah

Well you have been thru the mill haven't you? Please do not unestimate yourself and your pain and all you have gone through. I think you have coped marvellously. Pain is pain and I think you have been at the top end a lot of the time and for a long time. I can quite understand that you are scared and it is scary being diagnosed with something but at least then it has a name and you can go forward from there. It is a shock to be diagnosed, but as you will have seen from others here, one does get over it and things do improve even if one has to make a few life changes.

I suggest that you not only think about what you are going to say to the gp but write it down. Perhaps also describe your pain from 0-10. Last week the consultant asked me what my pain was like and I said sometimes 9 and that made him sit up in his chair. They appear to be able to relate to the amount of pain you're in if described in this way.

We are all pleased to hear that we have helped you along your way and we shall continue to do so, when you post. It does help to talk to others in the same boat. We do understand even if our pain is not as bad as someone elses, we can definitely relate to it, and you will always get sympathy even if we cannot answer your questions.

Chin up luvvy and please keep on posting and let us know how you are going on.

Luv and a heartfelt cyber hug
Elna x

ritwren

I think you're incredibly brave and strong. Good luck tomorrow with your gp, do tell it like it is and ask for a referral as well as pain relief. Best of luck.

jordan7j

sjohns015 wrote:

Hello,

I have been reading the forums for a couple of weeks now and I have to say that I have laughed, cried, and well, just felt a huge amount of empathy for so many of you. I just wanted to say a big thank you for helping me keep my spirits up - even though you didn't know you were

I haven't been diagnosed with any form of arthritis but 2 weeks ago had some blood taken to test FBC, ESR, CRP, RF and Auto-immune anti-bodies (I've googled them now and know what they're for) I'm still awaiting the results and have no idea what's going to happen. The pain I have been experiencing in my joints (which seems to be most of them) has gradually got worse and I am now struggling to cope with it (I have 3 children 7, 5 and 2) so I have another appt tomorrow morning to beg for some strong pain relief.

I know none of you know me and I feel like a bit of a fraud writing on here without having been diagnosed as a fellow sufferer of arthritis. I am also really sorry for what may turn out to be a pretty long post but I have tried to write this out so many times and have today decided to just go for it... I haven't gone into any major details about the symptoms I'm experiencing as I feel I would cry at seeing them all written down. However, I am completely aware of my own physical limitations (or was, I should say) and thought until about a month ago that I have a high pain threshold (HA!) I prolapsed a lumber disc 13 years ago and after a discectomy, an epidural and a stay at a rehab centre I developed something called segmental myoclonus of the spine (in 1998) - basically a jerking action which originates from the waist (for me anyhow) but depending on my posture at the time affects the type of jerking motion which results (if you know what I mean?) Apparently caused through the trauma to my spinal column. I was initially told it was psychosomatic and for the first 6 months felt like I was going out of my mind - until I saw a neurologist...phew! It took me a very long time to accept it all and I still now feel very self conscious when having a bad day in public. I was unable to carry on with the career I had chosen and have had to deal with varying degrees of pain from the waist down almost every day since then. In the long run, I just kind of got on with it really.

I guess I'm pretty scared... For the last year or so I have been suffering with extremely painful feet when I get up from sitting etc and always just put it down to referred pain from my back... then my knees started to feel stiff and painful and now it seems as though almost every joint in my body is somehow afflicted one way or another (especially right now as I write this!) I am worried that I may have ignored the early onset of symptoms for "whatever it is". I always just put everything I was feeling down to my back injury, I used to joke that the reason why I would often fall asleep in the afternoons (or just feel really sluggish) was because, "I'm carrying an injury don't you know?..."

I have no idea how you all do it! I often find myself fighting back the tears and feel extremely inadequate as a wife and Mum. I dread having to go through all the tests and the stress of waiting for results.... I've even been rehearsing what I'm going to say to the Doc tomorrow so that I can try to get him to realise just how rotten I'm feeling in the space of ten minutes.

I have come to one decision though, and I was kind of wondering what you think? Whatever the results of my blood tests I am going to ask to be referred to a rheumatologist (even if the bloods don't show anything) as I need some answers as to what is causing all of this pain - I feel as though I am struggling to get through the day at the moment - I knew why before and I think the not knowing adds to the worry. I just don't want to sound rude when speaking to the Doctor, after all they're the experts (or so they claim... )

Anyway, if you've got this far, thank you so much for just taking the time to read my post. I've been feeling pretty nervous about doing this as I know that so many of you cope with so much more and I still haven't had any form of diagnosis yet.... I'd cross my fingers for a good outcome but seem to be having some trouble with that at the mo'

Take care all,

Sarah

Hi Sarah, so sorry you have to cope with all this, it must seem that this is never ending!!! Please dont feel that you shouldnt be sending posts, it is hard waiting for a diagnosis, and i completely understand you insisting on a referral to rheumy no matter what. Its true that sometimes tests come back "normal" even though you have all the symptoms. I hope you get this sorted out as quickly as you can, especially with 3 young children to look after. The not knowing definitely adds to the worry, it did with me too. You should definitely not feel an inadequate wife and mother, thats in no way true!!! Just keep thinking positively, and that you will get this sorted, good luck to you, remember we are all here for you. love Barbara x

debatat

Hi Sarah and welcome to the forum. I hope your doc appt goes well and that you get your referral to a rheumy. You do well to cope with all that pain and 3 children. I hope the doc can give you something to help with the pain.

Take care

Deb

breane

Hi Sarah and welcome to the forum. I do hope your appointment with your GP goes well and that you will be able to get stronger pain relief.Please let us all know how you get on.Take care,Breane.x :P

mistywillow

debatat wrote:

Hi Sarah and welcome to the forum. I hope your doc appt goes well and that you get your referral to a rheumy. You do well to cope with all that pain and 3 children. I hope the doc can give you something to help with the pain.

Take care

Deb

Hi Sarah
Welcome to the site, it must be so difficult for you to cope with all that pain and try and run a household with 3 young children. Hopefully your gp will be able to give you something to ease your pain and I certainly think you should request a rhematology appointment, as they are the best people to help with joint pain.
I also think it is very important that patients work with the medical staff as a team rather than passively accepting anything that is put forward. You know your own body better than any doctor and so working together to find the answer makes sense.
As the others have said, it is good to write down exactly what you need to ask, because it is so easy to forget once you get to the clinic.
Hope you get some good results
Gillx

page35

Hi sarah
welcome to the forum
i think asking to see a rhumy whatever the bloods says is a good idea. the bloods i had done at docs all came back fine, twice, then after i kept going back cos still felt cr@p, doc reffered me to rhumy done different blood test and said i have RA.
not that i am saying thats what you have but rhumys know more about these pains.
i hope that all makes sence im half asleep sorry.
good luck tomorrow
Page

magenta

Hi Sarah,
Nice to speak to you
It took me ages to pluck up the courage to post on this site and I'm glad I did. I've had lots of questions answered and everyone is very supportive.
You have to ask for a referral to a rhuemy, your dr might even do that anyway.
I have 2 kids, girl nearly 6 and a wee boy 3 and a half. I work 24hrs a week and it kills me. I know exactly how you feel-don't know if I'd cope with a third child but saying that, I know I would, cos you do don't you? Anyway, just wanted to say hello and welcome to the site.
I'm glad you've taken the first step by posting on here and hopefully see many more posts in the future. Take care and please let us know how you get on,
Magenta xx

livinglegend

sjohns015 wrote:

I was kind of wondering what you think? Whatever the results of my blood tests I am going to ask to be referred to a rheumatologist (even if the bloods don't show anything) as I need some answers as to what is causing all of this pain.
Sarah

Right thing to do Sarah, as blood tests can come back normal but you could still have RA.

Let us know how you get on at the docs and please try not to cry at our replies.


Joseph 8)

eileenc

Hi Sarah - the first post is always the hardest so it will be easier from now on.
I have always found this forum a source of inspiration and support even before I got the courage to post my first message - and I still trawl through all the older posts and feel as though I know most of the regular posters now.
Wow - to struggle through day by day with young ones and seeing to all their needs is testiment to what a good mother you are so put all the feelings of inadequacy behind you - easier said than done I know!
I hope that you get some help from your doctor re rheumatology dept - I don't know about the others on this site but the dr definately takes my pain a bit more serious than he did before I was diagnosed - having the label of RA has definately made a difference to my treatment at the Dr's and the strength of the pain killers!
Take heart that there are people here that know what you are going through and we all have our good and bad days - sometimes we give support, sometimes we need it - the important thing is to know you are not alone.
lots of 'soft cyber' hugs
Eileen x

ritnew

Hi Sarah and welcome to the site
I was like you and lurked around for ages before I put my first post on. I have OA and have just be given a new hip.
I really admire all the people on here who have to cope with this terrible disease, no matter what sort of arthritis they have, specially the ones who have children and jobs to cope with as well I don't know how you all do it. In a way I've been lucky all my kids are grown up, I have a daughter at home and my husband and I don't know how I'd of coped without them so I'm really full of admiration for you managing a home and 3 children and having to put up with all that pain.
Good luck at the dr's I hope he can help you to start controlling the pain better and let you get back to some sort of normality.

Rita X

valval

hi poor u it is the worst thing not knowing and being in pain i hope u get sorted its lovely having u on here keep in touch we all help each other out when things seem so dark a smile helps so much good luck when u get right meds life is so much better

sjohns015

Thank you everyone for all of your kind words and encouragement. I know this was a long time ago and I did try to reply at the time but the Dr's appt didn't quite go to plan and I ended up so deflated, I kind of ended up burying my head in the sand a bit.

I haven't really been back to the forums for a while and now find that as time goes on, I find them harder to read - I am quite afraid, to be honest and now that the arthritis seems to be more of a reality (I have a rheumatologist appt at the end of the month after seeing a different Dr in January and have asked the helpline team for some advice) and that it is becoming increasingly obvious that my fingers and toes aren't "right", I am starting to struggle with facing it head on (if you know what I mean?) I am hoping that in time I will "get a grip", "buck up", "have a word with myself" and all of those other silly phrases, and be able to post for others as you have so kindly done for me.

Please take care all,

Sarah (((hugs)))

elnafinn

Dear Sarah

I for one am humbled that you bothered to call in again, feeling like you do. I can quite understand that you do not wish to be a part of the forum at this time, but you know we are always here for you, should you change your mind at any time. It is a horribly worrying time for you and I hope that you get some answers from your rheumi appointment later this month.

In time you will come to terms with it all, many of us have been through the feelings you are going through and have come out the other end.

I wish you well Sarah,

Luv
Elna x

dippydoodah

Hi Sarah
Im sorry to hear you're going through so much at the moment and I can totally sympathise with you as Im in exactly the same position.

I am a married mum of 3 little boys (9, 5 and 3) and its hard work, even without the pains. I started with pains in my toes last year and they gradually spread to near enough every joint in my body. Ive just started now to feel pains in my hip too, the one place I had no pain. After several visits to my GP, who is lovely, he eventually said it sounded like Rheumatoid Arthritis and I got an appointment with a Rheumatologist. I am in the same position as you. Im waiting and still don't know whats wrong with me officially yet.

From what Ive read on here over the last week or so, it can take a long time to be diagnosed so I'll just have to get used to the fact that its going to be a waiting game. Ive had bloods and x-rays taken and Im waiting for the Rheumatologist to reply to my GP with the results. That was 3 weeks ago and Im being very patient...

I have a wonderful support group from my family and my husband but that doesn't stop me from feeling inadequate as a mum and a wife, especially when I have to ask my husband for help. He is fantastic and supports me 100% but it is still fustrating as Im sure you're the same. especially on the days when the tiredness kicks in and I barely have the energy to walk let alone look after 3 boys, which just makes me feel lazy.

My Rheumatologist told me he was of the opinion I had Osteoarthritis not RA. Although, unfortunately, my Dr barely listened to me at my appointment and didnt ask any relevant questions so I'll be intrigued to see what his 'results' are.

If I have one tip for you, its write everything down. Even the smallest pains and the smallest tasks you find difficult. They all matter. Make the Drs listen and don't leave that office until you're satisfied with what information has been given to you. Take someone along with you, I took my husband. My only regret is that I didn't make him listen.

Sorry about the lengthy post but I feel like I'm in the same position as you so if you need to talk to someone, you can message me if you like.

Hope your appointment with your GP goes well and that you get some answers. This forum is fantastic for information and support.

Caroline x

salamander

Hi Sarah, My arthritis took a while to diagnose and I think that is the worst time as you really don't know what is happening to your body. I thought I was going a bit mad as could not understand why my legs wouldn't work! I tried exercising, stretching, massage - the lot and it just got worse. My GP's were a bit rubbish at giving meds to help and also getting my referral through so suffered at home not being able to move for weeks. It was a very frightening time. Also, I found it hard to ask for help as I kept thinking it would go away soon. I hope you will feel better when you see the rheumatologist, they see people like us all the time. If you are struggling at home, ring your local social services and see if you can get an occupational therapist out to assess you and get you some aids. You may not need them - I didn't bother but wish I had in retrospect.
Good luck.

frogmorton

Oh Sarah


You could be me :shock: I had back surgery about 7 years ago now and put everything down to my back too :shock:

I DID get to the end - you wrote it really well - from the heart and as it is.

You have done amazingly well you know and are not an inadequate Mum or wife at all. They all love you and will support you while you go through this.

I agree whatever the outcome ask to see a rheumy - my bloods were negative, but the rheumy still calls it RA. When you see someone who understands your symptoms you will feel nothing but releif (greif and all the rest too though ). There are oher tests which can be done too and a good rheumy (apparently) diagnoses from symptoms and hisory as well as blood results.

I hope you are able to be assertive with your GP and hope you get some good pain rel;eif to take in the mean time.

Please do keep posting and we will support you

Love

Toni xx