Feel I have been labelled, because of Depression

welsh_lady

Hi everyone.
This is a long story:- starting with my Gps, went back many times to them with chronic pain down my spine, neck and in my left shoulder, they refused to send me to see a Rheumatologist Dr and instead sent me to mental health unit, was told it was depression, and ended back there many times over the next few months, was asked what was my problem, always told them the pain down the left side. They decided to try ECT (Electric Shock Treatment) to the brain, this was 1 day every week for 6 weeks, my husband was not happy about this treatment, and he wanted me to have a MRI Scan 1st, they refused and went ahead with the ECT, after 6 weeks and no improvement they told me it was not depression. So over the next few months still in severe pain, I was taken to A&E, where I was told I had OA and Spondylitis of the spine, neck and shoulder, was only then seen by a Rheumy Dr, who told me about Anti-TNF, but because of my age, he wanted to try something else 1st, and put me on ARCOXIA, after 5 months and no improvement, was again admitted to the ward in chronic pain, my husband phone and asked if the ANTI-TNF could be brought forward like he said, he did not like it, give me a big injection and told me it was Fibromyalgia and discharged me from his clinic and said ANTI-TNF would not work on Fibromyalgia.
WOW want an injection, it worked for few days and how nice it felt, no pain, no inflammation
Then after a few weeks, back to square one, in pain, all down the left side and no one to get back too.
We was lost for several months, constant pain, one night called out the emergence Dr, who told me I had severe arthritis on the spine, neck and shoulder, and that with today’s medications there is no need for anyone to suffer. He told me to see another Rheumy Dr, this time he told me to go to Cardiff, so we did and she told me that I was right all the time, especial what I have told them, and she said that SULFASALAZINE and ANTI-TNF was optional, she did test and told me I had Undifferentiated Spondyloarthopathy, so she put me to Sulfasalazine, the worked but not enough, after several months my husband asked about ANTI-TNF, opps here we go again, she stopped the Sulfasalazine and said ANTI-TNF in not optional now. WHY?.
She told me my neck was a mess, that I have bursitis and tendonitis and a degenerative shoulder, there is white matter damage in the brain.
Seen Orthopaedic Dr about the C5 C6 op, there is bone growth going towards the spinal cord. had to have MRI Scan because he wanted to see what state my spine is in, waiting results.

We are now both lost and don’t know what to do, both Rheumy Drs have said about ANTI-TNF, both have gone back they’re words.

I know of simple way to get rid of the pain, that is to end my life, I don’t want too, but I cant live with the pain.
My husband is trying to keep me strong, but it is hard.
Now on 30 tablets a day, most are pain killers that no nothing, fed up of tell every one that they are not working.

Sorry about the long letter but it is important for people to understand what we are going through.

elnafinn

Hi there

This is such a long "story" and I feel immensely sorry for you (and your husband) and how you are feeling at the moment, which is not at all surprising.

My suggestion, for what it is worth, is to pick up the phone and talk, to someone at the helpline here - number top right corner of this screen. You have absolutely nothing to lose and everything to gain.

I think, you need to do a lot of talking and they are there for you and you will not be rushed at all. Would you do that for me please?

I send you courage and gentle cyber hugs - you sure could do with some, I know.

Love
Elna x

skezier

Hi Welsh Lady,

Yourpost has really annoyed me! How dare they mess you up to the point of Electric Shocks! I really hope someone got wraped over the knuckles for this?

As to you, please don't think only death will end the pain. I was thinking that a year ago and now they have got the pain to a point I still have a life, be it a modified one on the one I wanted/had.

I know its easy for us to say but I promise you you will get some relife as soon as they actually start helping you. I don't know what else to say except send you a cyber ((( ))) and hope you now get the treatment you deserve and not the shambles they have been giving you. Stay strong and please let us know how you get on. Take care Cris x

vonski

Hi Welsh Lady

Your post really upset me, you have been through so much and been messed around too.

Can't really add much to what Elna and Cris have said but if you do ring the helpline I'm sure it will be worth it, they might send you information on how to cope with all this too.

I know the pain must be getting you down and I have been there too but my Dr. asked me to stop and think what it would do to my hubby and son and even to her. It did make me think and for now I'm glad it did.

You should keep trying your Dr./Consultant and hope that you do eventually get through to them and get the help you need and deserve.

Love
Vonski x

livinglegend

I totally agree with the posts above and would also urge you to phone the helpline.

Also, you can now contact your local NHS physiotherapy department, to ask about self-referral. With a broad background in all aspects of health care, physiotherapists are well placed to act as first contact practitioners as well as offering skilled specialist advice.

Physiotherapists are able to assess, diagnose, treat as appropriate, enable self-management or refer as appropriate, without the need for initial medical referral.
http://www.csp.org.uk/director/press/pressreleases.cfm?item_id=1E7493D2F1BDE1012D0F815F9A1BCFC9

Joseph 8)

woodbon

Hello, I think everything has been said already. I just want to add my support to the others. The Helpline is very good and I do hope you use it. There are drugs that can help with pain and treatments of all kinds, all you need is the right person to refer you to it. I send you my best wishes for a good outcome and lots of love Sue

frogmorton

Oh NO!!!
I cannot beleive what I just read :shock:
I cannot beleive you have been treated like this in the day and age :shock:
Such a good job you have your hubby with you for support - he really seems to be a rock.
I do not know what to say, but you could ring the helpline here - they will give you advice and listen to you.
We will lways be here, but what you really need is a way forward.
Maybe some of the guys on here see a good rheumy your way that they could recommend?
Then you could try to get a referral to him/her.
You take very good care
and keep posting
Toni x

lindah

Hello,hope you feel a little better today.
It is dreadful to feel you are getting nowhere but honestly the support of everyone on here helps.
The helpline are brilliant and the FRIENDS on here are wonderful.I know they can't make the pain go away or hurry up your appointments but they ALL understand because we all have been there.
Linda H

lindalegs

Hello Welsh Lady,

Pain is so terrible and the trouble is we can't think beyond the pain we're in to think logically For your husband's sake don't consider ending your life because although your pain would end his would start and he would have the rest of his life to live without you and I'm sure that's not what you'd want for him.

I don't know how long you've been on your medication but some do take a while to build up in your system and if your present meds aren't working there has to be some others you could try. I was once told there is a mountain of painkillers out there and it's just a matter of finding the right one for you. What about acupunture, would that be worth a go?

Don't give up.

Don't let the arthritis beat you.

You have some great suggestions from the others above - it's time to start the battle - I know you can win.

Luv Legs XX

debatat

Hi, I am so sorry that you have had to endure such a terrible time. Do call the helpline, also maybe you could have some counselling to help you to come to terms with what has happened to you and your illness. Please keep posting and let us know how you are doing.

Take care

Deb

woodbon

Hello,
Hope you're feeling a little better today, with the sunshine. Try and live each day as it comes, without thinking too much about the future, it helps me to do that. Love Sue

suncatcher

I was very saddened to read this story and what they have put you through. :shock: :shock:
I would recommend the help line there are pain management courses to help you which artheritis care runs and i wonder if you could change your doctor.
I cannot believe the way they have treated you. keep strong there is good people out there who will listen and help you i hope you get the help you deserve from joanne

lindah

Hello.how are you today,feeling brighter I hope.
Just to let you know we are thinking of you.
Linda H

kathbee

Hi Welsh Lady

Hope you are feeling a little better .

I remember when I first presented with
joint pain, that would be over 30 years ago
after numerous visits to my then GP
he told me that the problems I had were
probably because 'I didnt work'. I had
two small kids at that time.

So in other words he was telling me it
was all made up or all in my head.

20 years later, yes, 20 years after
struggling with pain in my hands and feet,
I was diagnosed
with RA.

So it must have been awful for you to be sent
to the mental health unit and have all that
treatment. Thats a terrible thing to happen

Hope you improve lots.
Glad you came on the forum as we are
all here for you.

Kath

border

pain and pain killers makes one depressed anyway and there is seemingly no way out of it. To be so misdiagnosed and one's complaints to be ignored does not appear to be 'best practice' Follow everyone's advice and contact the helpline it is confidential.
Screw up your courage to do this.

lindah

Hello Welsh lady
I am wondering how you are?
As you can see by the replies on here there are friends waiting to find out if you are o.k/
Sending you warm wishes
Linda H

welsh_lady

lindah wrote:

Hello Welsh lady
I am wondering how you are?
As you can see by the replies on here there are friends waiting to find out if you are o.k/
Sending you warm wishes
Linda H

Hello everyone.
sorry its been sometime since all these kind words were left for me, but things are still very bad, been bed bound, pain still not giving up, managed to get to see Dr, and had an injection in the shoulder, but was very hard to get there.

the kind words have helped so much.

2 more weeks before seeing Rhuemy Dr. cant wait.

its hard to keep track as the computer is downstairs and having hubby to print the messages and reply to this today.

thanks for the support.
welsh lady and hubby.

frogmorton

Hi Welsh Lady and Hubby!
So glad to hear from you I amongst others were very concerned for you - so It is good to hear you are ok.
Sorry you aren't much better yet, but good about the seroid jab.
Two weeks is not so long and wish you all the best for that.
You MUST let us all know how you get on
Take very good care
Toni xx

c4thyg

Hi Welsh Lady from a Welsh not-so-lady!!

I have to say that I am shocked by your story but unfortunately not surprised. I wanted to ask where you are living because I'm in Newport and I have a great rheumatologist. I'm not sure if it's a good idea to post names on a public forum but please PM me if you want his name. I've been with him for over 2 years now and he's actually just jumped through loops to get me assessed for Humira which I'm hoping to start on soon. As far as I'm aware you can request a consultant by name and I've actually just seen someone in Bristol (for something else) this way.

I hope you are feeling better. Take care. Cathy xx

livinglegend

c4thyg wrote:

I'm in Newport and I have a great rheumatologist. I'm not sure if it's a good idea to post names on a public forum but please PM me if you want his name. Cathy xx

Hi Cathy

Say hello to Newport for me, I was at University there in the early 90s. Great place.

You are right about not naming names on the forum, but a PM gets the information across without the forum moderator having a hissy fit.

Joseph 8)

page35

Hi welsh lady and hubby
sorry youre still having alot of pain
hope you get the help you need from your rhuemy and things start to improve.
best wishes
page

lindah

Just wondering how things are with you this week.
Linda H