new to forum,and just a little worried

LesBrown

Hi all, this is my first post so forgive me for making it a long one, like most with arthritis I’m getting to the end of my tether. I have suffered with arthritis now for 10 years; I’m 48 now and haven’t been able to work much for the past 8.

I’ve read quite a bit here before posting and it seems what’s happened to me is quite common and you may have guessed it’s the doctors again.

I have arthritis in my feet, knees, back neck elbows wrists and fingers, and I have signs of it moving to my hips, have crepitus in my knees neck and elbows.

About 10 years ago when it first started I saw the doctors about my back and knees and told it was only the strain of my Job, I was a domestic appliance engineer and had been since leaving school, no follow-ups, no x-ray, nothing. I was pulled in by my work to see the doctor there who opened my eyes, He did a test on my knees and told me my cartilage was very thin and could feel bony protrusions that needed testing with x ray’s, he informed me my back felt odd to him but had no doubt arthritis is playing a part in my pain, he also measured the movement in my neck and told me I had a 30% loss of movement and was the first to actually listen to my neck with his stethoscope and said I had a small cement mixer in there. That was the last I worked but they kept my job open for a further 3 years hoping I could return, I still see my old Boss who says when are you coming back.

So back to my old doctor I go, now that I have lost my job I get a referral to rheumatology, after several x ray’s later and more gaps between appointments I get the news I have arthritis, but “its not bad” the consultant says,” you can walk through my door can’t you so it can’t be that bad can it”, I’ll never forget that. They did give me a RF test but it was negative so to this day I still don’t know what kind of arthritis I have just that I have it.

The pain in my back happens when I twist not necessarily as I lift, usually about 4 times a year I’m so bad I’m bed bound for days, now it’s a constant wave of pain, I take anti inflammatory and tramadol,co codamol didn’t work with my me,the tramadol is quite good with all my arthritis except the back,the worst bit I now have moved to a new GP, who will refer and just recently I asked to go to the pain clinic, my new GP was astonished I’d never been referred before, she has now insisted if there is anything she can do I must ask!, I still go along with the idea I won’t get referred from my last GP.

Not long now nearly there!

The pain clinic, great place, so friendly and helpful, I thought I’m not used to this. Anyway she has an inspection and orders an MRI and 6 facet joint injections in my lower back and a spinal injection,heres the bit I’ve been trying to get to ,she tells me that if the MRI shows up anything they will pull me back in and talk about what can be done,well the MRI has been done I havn’t had my injections but have just had a letter from the Pain Clinic calling me back in on the 22nd of September.

Now I’m really worried I think I should have done something earlier ,I’m also taking an antidepressant something a lot of you hear also seem to be on. Its getting harder and harder in this pain,my kids won’t let me lift anything, I’m a keen diy er but I’m banned by everybody,financially we are in trouble ,my wife works but its not enough,I’ve never claimed anything because I’ve been to proud to do it .this is the first time in the 10 years I have been really concerned ,its all just building up,I have no Idea what they want me back for?,just that it can’t be good.

Sorry for the long post

Les

elnafinn

Hi Les

Welcome to the forum. I am sorry to read your story.Try not to worry difficult I know. What I mean is worrying about the fact that perhaps you should have done something more earlier. What has happened is in the past, so you now take it from here, the present. You are being looked after at long last so that is a positive. So you have an appointment to return to the pain clinic on 22 September. I only see that as good because presumably they have the result of your MRI - would that be correct? Now they have more idea as to what is going on. Help/explanations/discussion will take place at that appointment. That is a positive too, isn't it?

Are you taking the med amitriptyline as you said many of us on here mention that drug? It is an anti depressant but only if taken in high dosage. That med has lots of other good things going for it in lower dosage as well. It can help people with IBS, migraines and to slow the body down so sleep is more readily available at night are some examples.

Keep posting, try to stay calm and do let us know how you go on at your appointment.

Elna x

Petitesse

Hi Les,

I am sorry to hear your story. I remember too how difficult it is in the beginning. The gaps between appointments and the long wait for answers and all the worries that go along with that.
I think a lot in here have similar experiences. It does take a while to get everything clarified.

I understand that it is difficult not to worry about whether or not yourself or the doctors have reacted late to your symptoms, but regardless if earlier action could have made any difference or not, you will have to take it from here. But I know all this takes some time getting used to.
It is good you are being checked now and can get help from the pain clinic.

It is quite a long while you have to wait to hear the results of your scans. I hope you can use this forum in the meantime to vent and make friends who know how you feel.

(((hugs))) from here.

valval

welcome. i hear in your post desperation and i can understand that. they did not give you the help you needed early enough to slow the dammage and that makes me so mad, i have no advice for you but i am sure the pain clinic have found a way to help you with the pain and that is why they are calling you back stay strong you have lots of loving people around you who love you val

hileena111

Welcome to the forum
I think the others have covered it all.

The only thing is dont be proud....if you are entitled to DLA or similar claim it please. I dont get it so am not very "up" on the details. I do know from this forum its a hard thing to claim for but go to your CAB or someone similar to help you fill out the form....using your worst day as an example. Its better in your pocket than just sitting not claimed.

Do you have a Blue Badge? if not apply for one.
I dont know if you drive but the badge is for you not for a specific car so if anyone else is driving you, use it and make use of the disabled spaces which are much wider .....to get things out of the car. Also to get closer to where you want to be.

Keep in touch and let us know about the results of the MRI......I have results of an MRI {possible spinal stenosis} round about the same time.

Love
Hileena

frogmella

Hi,

I have spinal arthritis and had facet joint injections at the end of May. they made a massive difference to me for a couple of months. They have enabled me to get fitter and lose a few pounds to boot. I hope that yours help you too.

Good luck

Helen

dreamdaisy

Ah, I see you met a consultant with a 'sense of humour'. :roll: It's nice to meet you and I am glad you have found us 'cos we know our stuff and are good at support etc.

From what you have told us my thinking is that you have osteo-arthritis as you didn't mention heat or swelling on or around the affected joints. Your new GP sounds much more clued up than your old one but the trouble is that sometimes we don't know what to ask for - again the forum can help with that. I think you've been called back to the pain clinic because they have the results of the MRI so I hope they will be able to further help with pain relief. Nothing truly takes the pain away (apart from general anaesthetic, that works a treat ) so we do have to get used to it twanging away but but there are distraction techniques which can help one a great deal - I'm sure AC will have a booklet on that. Ring the Helpline and have a natter, I am sure they will be able to send you some literature.

I am fortunate in that I am self-employed so I can tailor things according to my needs but over the years I have worked less and less and less. We are havng some decorating done and I have not been able to help in any truly useful way - it's rough, sitting about while others get on with things but that's the way it has to be. I was granted the higher rate of DLA (I needed crutches to get about, now I've graduated to a rollator) and the only way to find out if you qualify is to apply. There are other benefits too but I am not clued up about them - again the Helpline should be able to help or your local CAB.

As for the doing something earlier well, much as we would like to change the past we cant. It is as it is now and now is the time to start finding out what can be done to help you. I wish you well. DD

Helenbothknees

DLA (Disability Living Allowance) is one of the very few benefits which is not means tested, and purely depends on how hard it is for you to walk and do simple household tasks. Claim it; you're not begging for anything; it's money owed to you from all our taxes that we paid when we were able to. In effect, it's money that YOU saved for a rainy day, and that day has now come. But like someone else said, get advice from the CAB - though I managed it alone, simply by reading up all the advice that's available on the internet, so that's possible to.

Soretoe2

Hi Les, as you can see you've found a lot of people in the same/similar position to you here.
They've all given you lots of good advice. Do not worry about hospital appointments being long winded and erratic. It's par for the course these days.
Its highly likely that your case was reviewed internally and they want you to go back and discuss possible treatment. Quite normal procedure I assure you.
So go back on the 22nd and see what they are offering. Then you can decide how you wish to go forward.
As to your personal worries. Ring up the DLA and get a claim form. Do be prepared when the form arrives to sit down and be amazed at the sheer size of it and what they want to know. Read it all through carefully twice before you put pen to paper. Then answer as to how you are on your worst day. Take a photocopy before sending it back.
There are also other benefits available, depending on how bad your condition is. Do you have a local Citizens Advice? they are really helpful and can help you fill in the forms as well.
You have obviously paid your national insurance and taxes for years. So do not feel bad about claiming, you are entitled to help when times are tough.
Sometimes we have to be proactive and help ourselves, as no one will knock on your door and offer it!
Good luck and let us know how you are getting on. Joy

Numptydumpty

Hi, and welcome to the forum.
I have nothing to add to what the others have said. All good sound advice. Do apply for DLA. You are entitled to it.
All the best,
Numpty

LesBrown

thanks so much for the warm welcome,as I mentioned I've been reading the forum for some time before joining and I must say a fantastic buch of people you are.

I am looking into DLA but I live in an area that has taken advantage of the benifit and I really don't want to be labeled as one of them.I remember at one of my consultants appointments seeing a guy getting out of a van,taking his overalls off and walking into the hospital,I didn't know he was going to see the same person as me and he was late,when his name was called he struggled to get up and developed a limp!

I like working on my car ( I have a 72 MGB )and working around the house,I push myself at all times and pay for it later,I can do some work but who wants to employ someone that can't work 50% of the time.I've thought about self employment if the main areas of pain could be reduced but don't know if I would be causing anymore damage and I havn't got the finances to do it anyway,I looked into grants but there dosn't seem to be any.

it all seems to be a waiting game,if there was more awareness into arthritis I'm sure this lengthy process we all go through could be shortened.

Thanks

Les

barbara12

Hi Les and welcome to the forum..only Im sorry you had to look for us in the first place
You really have had a long haul of this, your story will be repeated time and time again, some GPs and consultants really are hard work .
Like you I have OA in my back and a few other places, at least now you are getting somewhere, you must be so worried about the work issue, but get the appointments out the way and see if the injections help, I am waiting for second lot.
I do wish you well with everything, and you carry on talking to us lot...it really will help to get it all off your shoulders.
Take care x

LignumVitae

Hey Les

I'm a bit slow getting to this, sorry! Welcome to the forum. I've had my arthritis for 12 years and it still has no official title or name, that said, you don't need a name for treatment, just symptoms so hopefully, via your pain clinic appointment, that may soon begin.

Don't see them recalling you as dire, I've got myself into a tiz before now about being recalled only to find out that they have options for me and that things aren't great but they aren't terrible either. I see it this way- if you find out it has a name or they have a treatment available for you etc then it's still going to be the same beast it already is-a rose by any other name will smell as sweet.

Please don't put yourself under pressure because you don't want to ask for help. The help is there for people who need it, it's not a hand out because you are being lazy/ have failed somehow so please consider looking into what is available to you. See it as a way to tick a worry caused by arthritis off the list...as much as it seems like a backward step it will probably be a forward step and you'll soon feel happier and less stressed.

Anyway, let us know how you go at the pain clinic,

LV xx