Hello..awaiting diagnosis, crying with pain, hating life.

rivermum

Hi everyone

I am a 41 year old mother of four. I have had problems with knee swelling and stiffness for a few years; xrays revealed nothing. The pain had been getting worse, so my GP referred me to an Ortho at Southend Hospital. He said "you have arthritis, take nurofen and deal with it". As you can imagine, I was a bit cheesed off and told him that his answer was unacceptable, and goes against everything his medical training had taught him. I also told him that as I only have one kidney I can't take nurofen. I was transferred to another Ortho who is brilliant. He performed an arthroscopy, which revealed chronic inflammation in the synovium suggesting Rheumatoid Arthritis, and Grade 4 changes in patellofemoral compartment. Blood tests for RA and Anti Cpp have come back normal, but the Ortho still thinks there is an inflammatory element to the arethritis and has referred me to a rheumy. I now have stiffness and throbbing in the joints of both hands, my elbows and both knees still. To top it off, I have just fallen down the stairs where my legs gave way and am now crying because as well as my joints hurting I have banged my head. My husband has been great, but my friends keep telling me what helped for their nan, and it sounds horrible but I want to scream at them that its not the same thing at all. Sorry to sound so grumpy but I'm so depressed and frustrated with it all. :sad:

haagan

Rivermum Ive just read your post. I am so sorry that you met one of the so called experts who don't do their job. I had a rheumy who was the same treated me like an idiot practically told me it was in my head and only sent me for body scan because my Gp had asked for it scan showed hot shots in all areas i had reported. He never called me back and my GP's looked after me. My current rheumy and her team are brillant and it sounds like your new one knows his subject. I have both osteo and PsA which is one of the inflammatory arthritis which don't show up in your bloods. Hopefully you will have a diagnosis soon giving athur :green a name is the start to living with him.
This is a brillant site and will support you all the way. Fay

elnafinn

Dear Rivermum

I am sorry to read your story and you have done the right thing to join this friendly,supportive forum. You will get people replying and offering sympathy, suggestions and hugs.

Today I feel you need a little more than that and I think that you would benefit greatly in talking to someone on the other end of a phone who understands and I suggest that you call the helplines today on 0808 800 4050.(No at top of the page). It is confidential and they are a dedicated team who will give you all the time that you need, once you get through to them, as the lines can get busy. Many forum members have called them and have nothing but praise for them.

There is no need to apologise for anything, you are amongst people here who totally understand how awful it all can be.

I do hope you feel a little better in all ways soon.

Hugs
Elna x

valval

hi no wonder you had good cry it does help shift some of the stress getting sorted it takes time for them to get the right meds they will help and then life will be much better my rhummy kept saying he could see no swelling in it but was getting awfull pain in hip gp sent me for xray and hips ok but knee shows signs of long term inflimation so much for rhummy glad got great gp sending hugs for bad days remember we understand and are here when you need to let off steam val

frogmorton

Hi Rivermum

Bless you bless you :shock: l would be bawling too

Friends aren't half stoopid at times...they do not realise just how tactless they are being do they? They are genuinley trying to help, but the real help you need will come form DMARDs which the rheumatologist will no doubt prescribe for you when you see her/him.

The other help you can get is by getting informed and seeking support form people like us who know how you are feeling and will not suggest silly things which will probably not work and will be ok if you want to vent, rant or cry.

OHs can be great too and some are wonderful, but here we can give them a break from 'goingon' about arthritis all the time....you start to feel like a broken record and some OHs want to solve the problem for you so feel helpless themselves :sad:

I hope you are ok after your fall and recover soon from it and that your head is ok.

One thing in your favour....you are clearly strong and assertive having stuck up for yourself and goit seen by the RUIGHT consultant in the end.

My bloods are negative too...but mine is inflamatory.

Love

Toni xx

hileena111

Hi Rivermum
So you've met some of "those" people have you???? Makes you sick {or me anyway }
their nan/sister friend had the same and they were able to climb mountains etc.
Yes you do need to be informed and there are so many people here that can help you.
It was said before .....ring the helpline.
sending you hugs (((((()))))))


Love
Hileena

dreamdaisy

I am not doing too well today myself so can only give you a brief answer - and I cannot top frog's, she is, as usual, spot on.

Diagnosis of this pestilence is not easy. There are many versions of the dross called arthritis, and it can take time to nail it down to one sort - the term 'inflammatory arthritis' covers a number of different kinds of problems and you may well end up with that diagnosis. That should not affect your treatment however, eg I have PA and take the same meds as RAers.

Arthritis is a roller coaster, and not in a fun way. It affects not only you, it will alter the people around you too. It is a difficult disease to understand, experience and deal with and the ignorance about it is immense. I was told yesterday to repent of all my sins and mine would disappear. Of course it will.

We are all different in how we are affected, we are all different in how we react to the medication, we are all different in the ways we find to cope. That is why this forum is such a good place to be: we understand. I think your second doctor sounds a great deal nicer than the first, I hope the blood tests will also measure your inflammatory markers called ESR and CRP (mine were high for years) but I have never had a positive rheumatoid factor. I wish you well, keep in touch. We know what this is like. DD

dreamdaisy

Hello rivermum, I hope things are as OK as they can be. DD

rivermum

Thank you, all of you, for taking the time to reply. It not only means a lot that I can vent somewhere, but also helps to know that there are some people really suffering from this horror who not only manage to stay strong minded, but also find the time to help and support other people.

I'm not so weepy today. It's my sons birthday tomorrow so I'm focusing on how many millions he wants to con me out of for a new gun! I have also bought a paraffin wax heater for my hands. Whether its psychological or not, the heat really soothes my hands and makes me feel generally better. It was £26.99 from Argos.

I hope you all have a good day today x

constable

Hi Rivermum

How are you today, we have spoken before haven't we, in vals cafe I think, so you know your way round now. So sorry the other day you felt so bad. It is totally understandable but you sound like you wont be pushed around, keep it up. Never apologise for venting off, we all do it from time to time, and it does make you feel a bit better.

Karen xx

carola

Hi RiverMum

Hope today is a bit if not a whole lot better?

Good for you sticking up for yourself with docs. I was initially diagnosed with RA / Immflamatory Arthritis but through much pestering at them rediagnosed me with SLE a form of Lupus and PolyArthritis caused by SLE.

I started with rashes, nodules and swelling of every joint that exists however a year and a bit on I have vastly improved with either or a mixture of horrid pills and steriods, healthy nutrition, gentle exercise and yoga.

With your assertive attitude you will soon have this all under YOUR control and be happy again.

All the best and enjoy your son's birthday x

Starburst

Hello RiverMum,

Welcome to the forum, sorry you're a fellow sufferer but glad you found us. This place has been an endless source of information and support to me, especially in the early days. You are not alone here.

You've been given some fantastic advice and I can't really add to it but I wanted to offer some support. It's hard to see the light at the end of the tunnel in the place you're at but when you're on the correct medication, things do start to improve.

I get frustrated when people tell me they have "a touch of arthritis" but I've learnt to nod, smile and ignore it. I find it does help to properly explain what inflammatory arthritis/RA actually is and then you get less of the irritating, unhelpful comments but some days, you're just not in the mood.

Be kind to yourself and know we are always here.
Sophie x

woodbon

Hi, Just to say welcome to the forum, its a good place to come to. You can see that you are not the only one, though at the time you often feel it. Also, you get lots of good advice and tips which help when you are new to arthritis, as its a new world! I'm glad that you stood up to the ortho and hope the rhuemmy sorts out drugs and things, to make you feel better. It can take a while to find the right medication and treatment.
Anyway glad to meet you! Love Sue