Newbie.What do I do now? Help and advice needed.PLEASE HELP

maxiwoo

Please help.
In a nut shell
I have been in significant pain now for 10 weeks. it came on suddenly. My joints swelled. Only joints NOT in pain are spine and ankles ( HURRAH FOR THEM!) I went to my G.P was prescribed pain killers. I return as it had not improved and was prescribed more pain killers and referred to a rheumatologist. While waiting for the appointment I went to A&E with the pain and was prescribed more pain killers and also diagnosed with inflammatory Arthritis. I was so hopeful the rheumatologist would cure me. I went along on Tuesday and was again diagnosed with Inflammatory Arthritis I was examined and blood tests and x ray were done to be looked at on my next appointment. I was given a steroid injection in my buttock and was told this would help and to begin coming off the pain killers. An appointment was made for me to return in three months. The problem is this steroid injection has not helped one bit! I told work I would be back in tomorrow ( I have been off work 2 weeks )because I expected some relief. The swelling has gone down but the joint pain is still as bad if not worse.
The question is ..what do I do now?? Do I just wait three months in this pain until I return to the rheumatologist? Do you think as steroids have not worked diagnosis is wrong and WHAT is Inflamatory Arthritis anyway??

Forgot to say I have also been referred to podiatrist and Occupational therapy. I am struggling to do general day to day living with this condition and am finding it difficult to get around.

Many thanks
maxine

dachshund

Hi Maxine
i'm so sorry you have so much pain i hope the injection works soon.
i have inflamitory a but i dont know anything about it.
i had the steroid inj last year and it took over 3 months before it worked i had the pain a bout a month now but have not
had another inj because i have just had a op on my foot.
i'm on parecetamol and diclofenic and fasttabs.
i hope you feel better soon. joan xx

valval

hi inflamitory artheritus is a name they give arther when you have swelling in joints it could be and of the nearly 200 it takes ages to work out which one it is started two years ago and still do not know which it is but with treatment feel much better so do not give up it takes couple of weeks for bloods to come through so if it longer than that give the rhummy nurse a call at hospital tell her you still having a lot of pain and is there anything they can do before your appointment is due the injection does take a while to kick in so i have heard good luck val

maxiwoo

Thank you so much for your replies.. I hope you are feeling much better after your op.
i did not know there was a nurse I could ring but i will be certainly be doing so. The injection i was told would only last up to 2/3 months and by then I would be back to see the consultant. I think I may be helped by somkind of crutch is this usual? but i dont know where to get them anyway.
I was kinda hoping it went as quick as it came but the reality that I may have a condition that I need to manage alongside my life and work is beginning to dawn on me.. I am so sad about that. I just want to be well and back to normal

valval

hi for some it gets under control and can live a nearly normal life so do not give up phone your hospital and ask for rheumy nurse or sectary of your rummy they will help if they can good luck but do not give up many find with meds life improves a lot you just have to manage your life a little different and listen to your body good luck we are here for you val

tkachev

Hello Maxine,

I'm sorry you are suffering. You are new to all this so ask as many questions as needed. I would ring the Rheumatology department you attended and ask to speak to the rheumatology nurse or anyone in the department and let them know the injection has not worked. Or go back to your GP to get some more painkillers/advice/sick note off work. Don't leave it 3 months as you will be in lots of pain and it is very depressing and difficult.One thing about arthritis is you need to keep on top of it.
It won't always feel this bad Maxine. Good luck,
Elizabeth

dachshund

Hi Maxine
i was told the inj would only last 3 months i have not got a rhummy nurse as i have oa arther wears you out you ache all over but there are ways to help as well as tabs i have a mobility
scoota but i cannot go on it i only had my op last mon and i must not put my foot on the ground for 12 weeks i have to hop
everywhere.
take care. joan xx

barbara12

Hi Maxine
The others have said it all, I just want to say welcome to this lovely forum, but please phone your rheumy and try to get it over how much pain you are in, hopefully they will see you sooner.
I do hope the injection starts to work soon.

constable

Hi Maxine,

I cant help but wanted to welcome you to the forum. I do hope that the injection does start working for you. You've come to the right place for advise and help.

Hope to see you round the forum, keep in touch as to how things are going for you.


Karen xx

dreamdaisy

Hello and welcome to the forum. I can understand your confusion and bewilderment over this, diagnosis of arthritis can take some time, especially for the inflammatory types. As for treatment, well, the earlier the better so although it may not seem like it to you, you are actually being treated quite quickly - what they have to do is ascertain exactly what is going on with you and then perhaps a course of meds can begin.

An inflammatory arthritis is one where the linings of the joints (oiled by synovial fluid) are persuaded by the body to over-produce the fluid, leading to swelling, heat and pain - well, that was the case with me. I have psoriatic arthritis and that is what my joints used to do: I started with my left knee, then one by one others joined in. An inflammatory arthritis is unlike osteo-arthritis - that is termed the 'wear and tear' arthritis and results from stress on the joints, it can occur after an accident and it presents differently to an inflammatory. I have that sort too. Woo-hoo!

Steroids are often used to try to reduce the swelling - they work by thinning tissues and thus reduce the trouble. I have had a number of steroid injections, into my knees, my ankles and my backside (the latter is designed to help the whole body) but I never received any benefit from them. They are contrary beasts - an early lesson you need to learn is that what might for another person may not work for you. It's a tough one, but true. Once the medicos have established what type of arthritis is affecting you then they should start suggesting medications: people usually begin on something like sulphasalazine, or methotrexate, these can be used alongside an anti-inflammatory treatment such as diclofenac or naproxen. A stomach protector should also be prescribed with the latter as they can affect the lining of the stomach/guts.

These meds do not cure the disease - they should alleviate the symptoms sufficiently for life to be more comfortable and they are meant to slow the impact of the disease on your joints. I have been on sulph and meth for years and am rarely troubled by side effects - these meds are not as scary as people may suggest tho some do have trouble with them.

Contact the helpline here and ask them to send you some of their literature - a list of their booklets is elsewhere on this site. Everyone's arthritis is different, unique to them. You do not know - and neither do we - how yours will progress. I am in my fifteenth year of this and no, the past fourteen years have not been good (probably because for the first five my GP routinely told me that the swelling in my fat left knee would go away, yeah, right) but you seem to be doing all the right things and quickly too.

As regards using a stick or a crutch, from what you have said it sounds as tho you could benefit from one on each side. Go to a disabled suppliers and they should be able to advise you about the correct type and height for you. I have been on crutches since 2002, I can't walk without them now (well I can, but only for about ten steps and then my gait becomes most peculiar and I have to stop after about twenty!), they do give one confidence and security.

Your life is changing, there would seem to be no doubt about that. I hope we can help you through this strange phase that you are confronting - we have all been there, we know what it is like. I wish you well. DD

lilyflower

Hi welcome to the forum, I've not had a steroid injecttion in my bottom so can't really help you with that one. Had them in my feet and shoulder and they tend to start working after 2 weeks and last a couple of months. So I hope yours will help you soon.
Good luck , Lily

traluvie

Hi Maxine..

Your story sounds so similar to mine 10 months ago,, came on so suddenly and the pain was horrendous??
What are the pain med you are on?? Sometimes it takes a whole concoction to get it right.. I am on tramadol, diclofenac, amtriptyline and other stomach lining drugs etc.. I also have the depo mendrone steroid injection in the buttock..The steroid helped with my swelling but not so much the pain.. my pain has decreased since taking hydroxychloroquine which is an drug they use for arthritis.. it took 2 weeks for me to feel benefit of steroid .. and about 8 weeks for the hydroxy to work (am in 3rd month of taking it) only now is the pain less severe..
Everyone is different though, as DD said everyones arthritis affects people differently..I would contact the rheumy secretary/nurse and ask if you could possibly have your appointment sooner due to the pain you are experiencing, also maybe see your gp , see if there is something else they can prescribe for you...
It can be a very daunting process, but you are not on your own.. feel free to ask anything.. your mind can be full of emotions at times like this and here is a great place to talk..
Let us know how you get on..

claud1ne

Hi Maxine.

First off, I'm so sorry to hear of your problems and worries.

I've had chronic pain from trauma (back and hip) and degenerative disease (mostly OA) for 6 years, and like many people on here, when it first kicked off I placed lots of faith in the doctors and the good old NHS - to do the tests and the scans, make diagnoses, and then make it all better again.

But in the real world, of course it doesn't work like that, and so I got angry, stressed, frustrated and impatient. The NHS is great for dealing with 'acute' conditions, but much less so for the chronic, enduring ones. Basically, if you're not going to die, then you wait, and you wait.... and one day you come to the realisation that there are a lot of health problems that are not well understood, that scans (even MRI's) are not always capable of coming up with answers, that treatments can be limited and /or ineffective, and that a 'cure' is rarely a realistic expectation.

So you have to have down to earth expectations, and to some extent 'take ownership' of your own problems, changing and adapting your life so ensure you can cope.

First off, you should see your GP, who will have been sent details of all your tests, bloodwork, diagnoses etc, and ask him/ her to explain the diagnosis, and likely treatment plan. Talk it out - go in with a list of questions. Explain your concerns about uncontrolled pain, because there are many options (some suit some people and not others). Steroids may/ may not reduce inflammmation; people react differently. If he/ she feels you would benefit from an earlier review by the Rheum. Dept, I'm sure they'll mail off the request letter.

But, it sounds as though just as big a priority is to talk asap to your manager at work, and, if you work for a sizeable organisation, the Occupational Health dept. Its best to talk to them early on, to put them in the picture. You may need help from them, in future, in terms of adjusting your role in work +/- conditions, +/- hours worked, to help you cope.

Best wishes, hope you get sorted out soon.

woodbon

Hi, Welcome and I'm glad you have found this forum, its very friendly and helpful. It must feel as if you'r the only person in the world with all the problems and pain, but you will usually find someone who has been through the same situation as you and will be able to give you the advice you need. Also the Helpline is very good and will be able to give you the information that you need, especially as all this is new to you.

I hope you soon get sorted out with medication and everything you need to know. Love Suexx

liesa

hope your soon feeling much better soon Maxine xx

frogmorton

Oh Maxine :sad:

Bless you. You sound to be suffering so much at the mo :sad: .

Rheumatologists can 'cure' you.....l think that that is not completely true but they can and do help you to get your symptoms under some control.

Inflamtory arthritises are treated using DAMRDs disease modifying anti rheumatic drugs which reduced the diseases activity in your joints. They do not cure the pain in the same way as paracetamol fixes a headache.

l agree with the others.... you can't leave it three months if you are having no treatment other than one steroid jab which hasn't worked for you.

If they have started a DMRD plaquenil, sulfazaline. methotrexate etc they can take weeks and weeks to work...but should reduce symptoms over that time.

Can l wish you good luck and (()) for you too.

Toni xx

maxiwoo

Thank you all so much for your replies. The support I have received from you at this time has been invaluable.
I posted as I was feeling so poorly and was a little lost however a lot has happened since then. I just got worst as the day went on and then had a sudden massive flare up in the late afternoon. It left me unable to move; it was worst pain than I had experience before and was much more wide spread. I went to A & E and was admitted to Hospital, I have spent 5 days in there.
I have been seen by lots of different rheumatologists and a diagnosed of Psoriatic Arthritis has been made. I had not previously considered this as I do not and have never had Psoriasis . My brother had it very badly and suffered all his life with it. This is apparently enough of a link to be able to give a positive diagnosis.
I have been given lots of literature on my condition and I must say I agree with the diagnosis totally. The books/leaflets could have been written about me. The type and distribution of pain described is exactly right and the pictures could have been of my hands and feet (Sausage like toes etc)
I spent 3 days on morphine and am now taking regular pain relief but it is a lesser dose than I was taking before I was admitted to hospital. I am on a high dose of steroids for 7 days to then be reduced by half until I get back into clinic. It will then be discussed with me if I want to start on Methotrexate.
I am feeling much more positive about my condition since my first post. I am totally pain free for the first time in ages which feels GREAT! For months I had been confusing having bearable pain with being pain free. I understand that this is a condition I will have to manage for the rest of my life and I do not know what the future holds BUT I am, and will try to remain positive about my recovery. I am happy with the diagnoses and feel there is a lot of knowledge out there for me to tap into. It seems many of you have trod this path before me and knowing I am not alone helps tremendously.
My Husband turns 50 soon and is having a party on 25/6/11 – My first goal is to be able to wear proper shoes to his party. WITH HEELS!! For his big Five O we also have a lovely cruise planned in July ( We had considered cancelling this because of my health) So my second goal is to be well enough to enjoy this holiday and all it has to offer.
Once again thank you all for your support x
Maxine
x

dreamdaisy

I was eventually diagnosed with PA. My problems began with a swelling fat knee, this was in 1997. At that time I had dreadful skin trouble on my scalp which I now think was psoriasis, it cleared up though once my knee started to really swell. In 2003 rheumatology eventually decided it was some form of inflammatory arthritis, but then in October 2006 I had a bout of psoriasis on my soles and palms, so they amended the diagnosis to PA. It did not start in the classic way, it has not progressed in the classic manner (my toes are somewhat swollen and painful now) but my nails etc are fine. My dad had small patches of psoriasis once or twice in his life, but his brother now resembles the Singing Detective. (His PA did not start until he was in his early 80s and it has run riot.)

There is no rhyme nor reason to this dross. I wish you well and I hope they can get you on the biologics sooner rather than later, they can make a real difference. My hospital now gives them after six months of meth etc if there is no improvement. I had to wait four years. That still grates. DD