Down in the dumps and confused

purplestorm

Hi all, I wrote this in the say hi forum, and some one said to post it here as it may get a better response....................

This is the first time on a forum so sorry if my post is long and not correct, but im in desperate need of getting it all off my chest!

Im 29 years old and have no idea what is happening to my body! It has taken 2 months of constant pain, three visits to my doctor who now refuses to see me, and four trips to hospital in agony to eventually get to see a Rheumatologist. My consultant has advised me I have O Negative Arthritis and in his words "I can tell you what its not but cant tell you what it is" but I cant find any information on it on line so im all confused!
At present I am on the following tablets daily

12 x 5mg Prednisolone steriods
4 x celebrex tablets
sulfasalazine 500mg tablets to be increased to 4 a day over 4 weeks

I am also on Oxycodone and Oramorph solution for the pain, which is constantly in one part of my body or another!

I have purple marks on both my legs betwen the ankle and knee, The pain is effecting both feet including all my toes, both ankles, both knees, both hips, lower back, both hands, all fingers, both wrists and my left elbow.

At present I have limited mobility and use a zimmerframe and wheelchair when the pain is at its worst, which causes the effected parts to sting burn, swell up and sometimes I have a red rash in the effected areas. . At the worst times usually the night I can be awake all night unable to sleep due to the agony i am in.

Im at my whits end as im not sure what I have or when I will be able to get my life remotly back to normal. I have had to stop driving and have had to give up my own business, worst of all I have a three year old son who at the moment I am relying on family memebers to help look after him which is agonising!

Can anyone shed any light on anything

Sorry this post is soooo long but i have no one to talk to and feel like I might scream if I cant get it off my chest


xxxxx

barbara12

Hi purplestorm
And a very warm welcome to the forum, but sorry you had to find us,I am so sorry you are suffering like this, I have OA so I cant comment on your meds, but you shouldnt be in such pain, have you been back to your GP and told them,
Hopefully someone with the same will be on soon, it may be a bit quiet tonight.
Dont forget that we are always here when you want to talk or even have a rant....I am a great believer in getting things off your chest,
Here's some hugs for you not much I know (((((())))
Love
Barbara x

tkachev

Hello and welcome,

How long have you been taking meds? They can take a while to get into your system. It is early days and you are being hit severely. But it ill get better when you are monitored and given various meds to target any inflammation and pain.
I am relieved you are being seen and helped, even if they aren't yet sure what diagnosis to give you. So sorry you are suffering. I really hope you get some relief soon.
We will be here for your many questions.

Elizabeth

tkachev

i just want to add a 4 week delay can't have helped and what a nasty GP considering how much pain you were in.

Elizabeth

frogmorton

Hi Purple storm

Seronegative arthritis.That's what he means.

You should find it on this site in their information section.

I am so glad you have found us we will try to keep you sane while your treatment starts to work. as ELIZABETH SAYS IT CAN TAKE A WHILE FOR IT TO GET INTO YOUR SYTSEM. Opps sorry caps lock by mistake.

You sound to be on the right treatment at least so hopefully you will get some releif soon.

Can I also ask what you are going to do about your GP?? You have been treated really badly. I hope you do get help there from another GP??

You take care - best thing you can do is talk to us lot on here.

Love

Toni xx

purplestorm

Thanks for the replies its just nice to know that there are people out there that understand the pain I am in!

My docs are very very rubbih, When I was given blood test results regarding an unreactive protein level it was the receptionist at the docs that gave it too me and then put the phone down I had to google it as I didnt have a clue what it ment!

Ive been on my anti inflamatries (sorry about spelling) for approx 7 weeks, the steroids I have been on for 3 weeks with the dose increased to 12 this last week and then the sulf tablet started this week. Its just horrible knowing that your taking all these tablets just to feel normal and without a diagnosis its hard as I either get stared at or people asks me whats wrong and I have to say I dont know! Its very frustrating when the consultant says you deffo dont have RA then gives you tablets which treat RA its the mixed communication that doesnt help especially when Im starting tp believe hes made up this O Negative Arthritis just to get me out the door!


x

tillytop

Hello Purplestorm and welcome to the forum.

Please don’t ever worry about not posting correctly or about posts being too long – we are always happen to listen and to help where we can.

I am so very sorry you are struggling so much. It is AWFUL to be so poorly and not be able to get to the bottom of it. I’ve been there myself so I do understand, as I know will many other peeps on the forum. I have had arthritis for nearly 16 years but I can still remember how desperate it feels at the beginning when you have no idea what’s happening and how things will be in the future.

As Toni says, I think that what the consultant has advised is that you have sero-negative arthritis which basically means that you have some form of inflammatory arthritis but that you do not have something called rheumatoid factor showing up in your blood. Inflammatory arthritis where rheumatoid factor is present is sero-positive arthritis. There are lots of other forum members who have sero-negative arthritis, so please know that you aren’t alone with this.

Inflammatory arthritis can be very tricky to diagnose and there are a lot of different types but many of them are managed in the same way, using the same drugs.

The prednisolone (steroid) and celebrex (non-steroid anti-inflammatory) are drugs which aim to relieve the symptoms but do not do anything to tackle the underlying arthritis. The Sulfasalazine is a DMARD or “disease modifying anti-rheumatic drug” which is intended to tackle the underlying arthritis, hopefully in time meaning that there is less need for the steroids, anti-inflamms and painkillers. DMARDS can take a number of weeks to start working.

I can’t shed any light on the purple marks or the rash I’m afraid but others may have some thoughts.

If you are looking for more information, I really suggest you avoid general “googling” because you never know how accurate or up to date the information is. Arthritis Care have a good selection of information on this website which is a good place to start.

I am so sorry that you are still in so much pain, despite the steroids, anti-inflamms and strong painkillers and that you are not getting any support from your GP. Is there another GP at your practice that you can see instead? Or is there a rheumatology nurse at the hospital who you can talk to for advice? The Arthritis Care Helpline will be open again on Monday and they are a really good source of support and information – telephone number is at the top of the page.

Thinking of you.

Love and ((()))s

Tilly xxx

julie47

Hi purplestorm
and a big welcome from me too.
I am really sorry things are so bad for you at the moment and hope the meds you are now taking help to cpontrol your pain very soon.

Take care
ju;iepf x

purplestorm

A hour on this web site and I get more information than all my trips to hospital thanks a million to everyone who as replied its cheered me up no end! The consultant has ruled out Reactive Arthritis which is one less on the list to worry about :-)

Thank you ever sooooo much for pointing me in the right direction and giving me a bit more understanding of it all!

Although I dont know which arthritis it is its just nice to know that there are people out there that understand and support you when you at your lowest!


Thank you to all


xxxx

traluvie

Hi Purplestorm...

You must have a whirlwind of emotions going on at the moment...
I am glad you have found some comfort from the forum..
It is a great place to talk and ask anything..
You are not alone..
It's so sad to hear your GP has been so unsupportive, he should be ashamed of himself.. I would seriously consider finding a new GP or seeing a different doctor at the surgery..
I hope that you feell a bit better soon..
Thinking of you..

MissKat

Hey hey Purplestorm...

Hope the meds kick in for you soon, it took a while for me... I too had to stop driving and was sofa bound for weeks. It drove me crazy, and in the midst of the feelings of cabin fever there's the added worry of what the hell is wrong with me!!!

The steroids really helped me, and am happy to say I'm now reduced to only 5mg a day now whilst my Methotrexate is increasing, I'm back to driving now and have just gone back to work...

I'm still finding out exactly what's up with me... some form of auto immune inflammatory arthritis... it takes time, and patience... a lot of patience...

But in the meantime, everyone here is lovely and supportive

Hope things get better for you soon

rugbygirl

Hi Purplestorm

I can sympathise with you completely on feeling down in the dumps and confused. For the past six months I have been suffering with back problems only to find out 3 weeks ago that I have OA of the spine. I wasnt given much information and I felt as if I had been pushed from pillar to post.

I had trouble with my first GP as she told me that the only thing I could do to help myself was to lose weight - Thats a bit tricky when you have an underactive thyroid which has only just been diagnosed as well!

I changed my surgery and found a much better approach and they were much more understanding, As it is mainly a walk in surgery they dont worry too much about set appointment times and they will take as long as is needed to sort you out.

You should not have to suffer in pain but hopefully now that you are on the medication you should start to feel better soon even if it is more like pain dulling than full pain relief. That is how it is for me anyway.

No matter how low you feel post on here and someone will soon be along to cheer you up and help you take a look at things in a different perspective. I have only been on here 3 weeks and I have really noticed that people care so much but unlike anyone else that have the understanding. They know how you feel. Joe public will never really understand the level of pain that we suffer with Arthur. We just deal with it and put a brave face on for those around us to save worrying them so much but at the same time we need to be able to release some pressure.

I hope that you can soon do things with your son rather than relying on other people but at the same time dont push yourself to be able to do things if you cant. It wont do you any favours.

Anyway hun, Look after yourself, listen to your body and let others help you if you need it but dont let them take over so that you end up feeling like you dont have a life any more.

lavenderlady

I was stunned to read what your Dr is like , I would look into taking this further, I certainly would be put off of a DR that could be like that to you, I'm lucky my DR referred me to a surgeon 3 weeks ago about my toe joints which have got so painful and deformed I find walking difficult, I thought he would refer me back to my rhumatologist but said no he would skip that as it would take far too long to be referred to the surgeon, how nice it that, now thats the sort of DR you all need !!!!
I have amongst other health problems OA and sero negative arthritis so have a few of us on here it can all get very confusing with so many different arthritis, I had so much help when plunged in to my 1st Arthritis op last may it was just an arthroscopy ( A camera in my wrist joint that was far too damaged and deformed to work) I then had the big op a new wrist joint last November and I got lots of help and advice which helped me so much they really know what we are feeling suffering and needing to know, michelle x

purplestorm

Thanks to everyone for your replies its been a brill help and a bit of a light at the end of the tunnel thing!

Im rather supprised to hear peoples responses to my Dr. Its quite mad as they have always been the same if your poorly dont go you only get an arrogant response, paracetamol and a lolly pop! Its nice to hear that other people havent experienced the same problems and I will deffo be looking into changing GP. Im a bit down on the medical profession sorry!

The meds are working slightly however is it normal to know that if you wernt taking the meds you would be in agony? although the pain is no where near what it was I can still feel the start of flare ups with the normal dull and sharp pains constantly.
I hope that makes sense its just mad I can feel the pain and everything starting but its not as bad obviously due to the meds!

I have started to experience pain in my arms now Im now of the opinion that I have such a nice body Arthur wants to take over it all (sorry but if I dont laugh i might cry!)


x