Can anyone help with regards to explaining a New Diagnosis.

cutieclaire

Hello, I am feeling a little, how can I put it!! Frustrated, silly, annoyed, down in the dumps, beeting head against the wall kind of feeling!!!
I have (normally) a real supportive family (mum, dad, sister and hubby) but they don't seem to understand at the moment.
Since Last Nov 09 I have been having tests left right and centre, I had already had been diagnosed at 14 with Poly Arthritis and when I was 7 I had Septic Arthritis and been in pain on and off all my life but things have been really bad over the past few months. Been diagnosed with inflamitory Arthritis and they are still running tests to see if it is RA. I have been given wrist supports, things for the kitchen and chairs etc and been told to rest as well. My family are not understanding this at all. I have been told," oh get on with it, stop getting so upset, it aint that bad, u aint as bad as some people, u could have something worse", I am just finding life a little difficult at the mo and noone is really understanding me at all. All I am on is paracetamol and Diclafenic until they know what best treatment and in so much pain, back shoulders, wrists, feet, hips, neck and hands. I just don;t know how to get through to them how I am feeling.xxx

jackie1955

Hi there and welcome,

Sorry to see you are suffering, hopefully you will be diagnosed soon and started on treatment. I have RA, and it came as a real shock to me!

Yes, people really don't understand this condition. Once you are diagnosed you could try a couple of ways of dealing with this problem. Like, get some leaflets on the condition and ask your family and close friends to read them so they have a better understanding of what you are going through or, on the other hand, accept that they can't/won't acknowledge that you have a chronic disease so they must just 'take you as they find you'!

Oh, and don't forget to come on here anytime because you will certainly find all the support you need - from people who know exactly what your going through!

Keep your chin up,

Jackie x

cutieclaire

Hi Jackie,

Thank u so much. I just feel out on a limb at the moment. Thanks for the support this has really helped. I have had bloods, xrays, and I should be having an ultrasound on hands and feet, been to OT and have physio next week. Go back on 1st March 4 results and hopefully some medication for all this pain. I get a lot of people moaning when things arn't done!!! Thats what annoys me and the fact that I am a lot more tired than normal. Hey doing and MA with 2 kids under 4 years and working is a lot anyway but now this I am well tired but no understanding doesn't help. Thank you for your support as it has really helped xxx

Claire xxxx

jackie1955

Hi Claire,

Your very welcome;

I found lots of people would say "oh, I have a bit of arthritis too" and then change the subject.....

Nowadays, I don't bother going into detail when asked how I am. I usually just quip 'oh, keep taking the pills you know". But I do come on here, and also attend a support group for RA sufferers that meet up once a month

Its good to talk

Jackie x

angel1

I am so sorry that you feel that you are are alone dealing with everything that is being thrown at you Claire. It`s now that you really need understanding and support, especially with all that you are doing, with your studies, and two little ones.

We have had many discussions on here, as to why, normally supportive families, seem unable - or unwilling - to accept this disease, in it`s many forms. No real answers, but possibly fear of the unknown, being unable to accept change, and also it being such an "invisible" disease.

Jackie`s suggestion of giving them leaflets to read is an excellent one. Knowledge really is power. Also, maybe take a family member with you when you see your Consultant. Let them hear it from "the horse`s mouth".

In the meantime, keep posting on here, and ask for any help you may need........I wish you well......Ange.

,

cutieclaire

Thank you so much for your advice and suport. It really has helped and hopefully I can take my hubby next time. I might download some info for them to read. Thanks again. Will be on here regularly now as I feel so much better xxxx

angel1

Forgot to say Claire, that, if you give the Helpline a call - number at top right hand corner of this page - they will provide you with the leaflets that you need.......Ange.

cutieclaire

Thanx 2 all. Will do. Cheers for all your support

I can go to bed smilling for a change!! xxxxxxx

mistywillow

Hi Claire
Just wanted to welcome you to the site. (I have RA and spinal problems) I think Jackie and Ange have given you good advice when they suggest educating your family about the condition. It can be so hard being in huge amounts of pain but not necessarily having any outward signs for others to see. Many people also think that everyone has a 'touch of arthritis' and just have no concept as to how debilitating it can truly be. So I would definitely take your other half with you to your doctor's appointments and get as much info as you can to give to your family. Having little ones to care for is especially hard but try and pace yourself wherever possible and prioritise the things that really need doing. Nappies might need changing but a little bit of dust and mess can be left without anything dreadful happening!! Hopefully soon you will be given appropriate meds for your condition to help get things under control. I wish you all the best
Gill x

chris7

Hi Claire

Sorry to read to have been going through the mill with all this and feeling not always understood. You have been given some lovely support and advice here but it was your last comment which struck me about how you were feeling.
One of the supportive ladies on the forum who is away at the mo having a TKR, once posted about the Spoon Theory. Not sure if you have heard of it but it certainly enlightened and helped me. It will come up if you google it. In addition to the leaflets it might help explain to your family some of how you are feeling at times.
Just thought I would pop in here and mention it.
take care
Chris

tkachev

Hi Claire
I get the same response from my partner and his immediate family.I am fed up with it too but I dont think I am ever going to change them.It is the one subject that makes me shout at them all although I try to keep cool as much as poss.
I just put up with it and defend myself as and when required.
Best wishes
Elizabeth

cutieclaire

Hi Elizabeth,

Thank you. I know what you mean, I get so frustrated. Oh well, I just need to plod on and get on with it as the family keep telling me!! Hope you are ok.

Thanks again Claire xxxxxx

tkachev

I do what I have to do but sometimes that doesnt seem enough for them.That is when I defend myself...and I never get any thanks for doing so much even though feeling so rough.It would be nice if I was told dont you do well despite all the lack of sleep,cracked joints etc....
Elizabeth xx

skezier

Hi Claire,

People eh? They will never get it I'm afraid less it pays them a visit...... Not suggesting it should though..... I could do a nomination :oops: :oops: :oops: :roll: I don't bother to say but now my wrists are getting a bit disfigured they are telling me to cover them up cus it makes them feel sick.... hence the nomination! I get asked 'why are you limping' by the same people who asked me last week and sadly its just how it is.

Giving them leaflets etc is probably a good idea, I did that with one of my worst critics but it sort of backfired cus now she is worried so I shall see the answers you get and see if I can pick up some necessary people skills here as well

I think what really matters is how you feel your self and others well some will get it and some wont. This lot here will always get it and be there for you though Take care Cris x

rosyred

hI AND WELCOME

Im so sorry ur feeling so low.
And i hoep u get it all sorted very soon.
Go back to ur doc tell them that the pain meds they have given u are not strong enough. keep on at them..

Hugs Alli xx

woodbon

Hi, Welcome, I'm glad you've found us. Its a shame your not getting the support you need from your family, but I think people really don't understand, they think arthritis is like the odd twinge we all get from time to time.

Still, you can always come on here and have a moan, we all understand how you feel and know ourselves, from experience. Anyway glad you've got here!
Love Sue

dippydoodah

I know this is a little late but I have only just joined this site. Im lucky to have great support from my husband and family but they still didn't know exactly what arthritis was like so I suggested they read a few pages from this forum.

I found it showed it soooo much better than any leaflet can as they can read from real sufferers and understand why some days Im tired or feeling it worse.

Hope you get the support you need and like others have said, Ive found fab support on here x

sharmaine

Hello Cutiecare
Welcome to the site. You mustn't feel silly about telling us how you feel. We understand what daily pain and discomfort is all about. Wow you certainly have had a lot of different things wrong with you.
I really don't know what to suggest as I have OA in knees; hands and shoulder but someone will come along eventually to help out.

If you are still in so much pain go back to your GP. You may need medication that is released more slowly. You shouldn't have to suffer like this. It's hard for family to really understand the sheer depths of your pain and unfortunately mainly other people think the same. I get all sorts of advice ie.... it must be worse if it rains or the weather is cold. I had the worse flare up ever during the summer! I used to try herbal remedies and copper bracelets; magnetic mattress covers - a load of old tosh! Osteo arthritis is a disease that attacks our joints; our muscles get thinner subsequently we have stiff, inflamed and sometiems swollen joints.

I hope that they can make a diagnosis soon because it sounds as if you're at your wits end with it all.

Take care; keep posting and let us know how you are getting on.

Sending you lots of cyber hugs and best wishes (((((((())))))).

Sharmaine

cutieclaire wrote:

Hello, I am feeling a little, how can I put it!! Frustrated, silly, annoyed, down in the dumps, beeting head against the wall kind of feeling!!!
I have (normally) a real supportive family (mum, dad, sister and hubby) but they don't seem to understand at the moment.
Since Last Nov 09 I have been having tests left right and centre, I had already had been diagnosed at 14 with Poly Arthritis and when I was 7 I had Septic Arthritis and been in pain on and off all my life but things have been really bad over the past few months. Been diagnosed with inflamitory Arthritis and they are still running tests to see if it is RA. I have been given wrist supports, things for the kitchen and chairs etc and been told to rest as well. My family are not understanding this at all. I have been told," oh get on with it, stop getting so upset, it aint that bad, u aint as bad as some people, u could have something worse", I am just finding life a little difficult at the mo and noone is really understanding me at all. All I am on is paracetamol and Diclafenic until they know what best treatment and in so much pain, back shoulders, wrists, feet, hips, neck and hands. I just don;t know how to get through to them how I am feeling.xxx