Normal life?

carol101

My Dr said that although i have OR of the spine, there is no reason i can't live a normal life. To a large degree, i do! It's only when i have a bad flare up that i have trouble walking properly and it only seems to be this past week that i have felt extreamly tired but this, it appears is down to depression, but other than that i feel fine.

But i have a few questions:

1. Is it 'normal' that i have a permanent, albeit mild, back ache?

2. Is it 'normal' that i wake up every day with a back ache?

3. Is it 'normal' that i can not do any bending over (ie, gardening) for more than 10 minutes without getting a back ache?

4. Is it 'normal' that i can't take any pressure on my spine (ie, someone pressing on my back) without being in agony afterwards?

5. Is it 'normal' that i have been in a physical job for the past 10 years but now i struggle with heavy lifting, standing and bending for a constant 8 hrs?


Have i got the wrong idea about what 'normal' is?

Carol XX

debatat

Hi Carol, when you are diagnosed with arthur your life changes. It can take a while to adapt to this and can give rise to conflicting emotions. Some 'grieve' almost for the things they have to give up. After a while we 'accept' and carry on . There are a lot of stages to go through before we get to this though.

I have OA,RA, Lupus, APS, diabetes, and quite a few other things, I have gone through a range of emotions, but have adjusted and adapted and found a kind of peace. You have to learn to pace yourself.

Life with arthur does mean pain, and tiredness. The trick is to minimise this as much as possible. This is where pacing and adapting come in. Flare ups are inevitable unfortunately. Hope this helps.
Deb x

annie_mial

Hi Carol

I've discovered that I've had to morph the old 'normal' me into the new 'normal' me. It's only natural to grieve for and miss the 'old' normality, but once you can accept the changes you find that your new 'normal' has it's own pathways and they can lead you to places you never dreamed of before.
This takes time, it took years in my case, many do manage it sooner.
I wish I had been more ready to accept, I regret now all the time wasted wishing for the moon.

Love n' hugs
Annie

ritwren

Things are relative Carol. What is normal for one person may not be normal for another. We are all very different and even 'tho some of us have the same diagnosis it will have a different effect on our every day lives and how we cope with it. Some people live with incredable pain and restrictions but it is normal for them and they find ways of managing it some days while on other days they cannot. There are even some days when I can put up with a huge amount of pain and restriction and other days the smallest thing can frustrate me no end and become a grumpy old bear. We all have good days/weeks and bad ones and our pain will be different in each of them.
For me it's about trying to find a balance with
1/the things I can do that don't cause pain,
2/ things that do cause pain but I have to do
3/and things that I do but suffer the pain for because I really want to do them although I don'nt have to and
4/things that I can't do at all.
People talking about normal does'nt mean anything for me at all anymore I have my own way of looking at things.
rita

carol101

I do understand i have to adjust and that my life won't just stop. What i can't understand is, if having permanent pain, waking up every day in pain etc is normal, does that mean my husband is abnormal since he doesn't have that kind of life? Does that mean that before i got OR i wasn't living a normal life?

I think we should be told we can still live a very active and enjoyable life, but life will be different. It's far from 'normal'.

Carol X

dachshund

Hi Carol.
I have oa of the spine and hips.and c palsy.
my back ache's all the time and it's worse if i stand for to long or bend and then walk when i stand up again it feels as if a bone as moved out of place it also go's stiff.
i think its best to be as happy as you can as i have a scoota and a dog we get around.i also go to the hydrotherapy.
i take anitriptine at night.
i have had oa since june.
all the best joan xx

vonski

Hi Carol

If you are having a flare up then yes until it settles down but if pain never eases off I think you should see you Dr. again about different meds or a visit to the pain clinic. I don't think it ever really goes away but can be a lot easier.

Love
Vonski x

elnafinn

Hi Carol, my lovely, you have been doing one heck of a lot of thinking and analysing, haven't you, which it good.

I really think you have hit the nail right on the head when you say that we should be told we can still live a very active/active and enjoyable life but life may/will change to a greater or lesser degree.

I always ask myself, what is normal? We may think we are normal and others not, but they will also think themselve normal too if you understand what I mean.

Oh, my brain hurts :roll:

Take care, Carol and look after yourself and your hubby,

Love
Elna x

debatat

Carol, i don't know waht your perception of 'normal' is. So its hard to answer the question. You have OA so it is 'normal' for you to have pain. I have arange of conditions so it is 'normal' for me to experience a range of symptoms. If your husband does not have arthur then it would be 'abnormal' for him to expperience pain.

Normal means different things to different people. I have had to adapt and adjust but i still find ways to do the things that are important to me.

I wish you well.

Deb x

dutchess

Hi Carol
I can totally understand your frustration at your drs comments. I was only having a similar conversation with my hubby the other day. My consultant has said the same thing to me on many occasions. I really don't know what he means by 'normal' though! My husband is very frustrated with it all and says if he says it again when I next see him he'll have a few choice words. Just coming through a very difficult flare so my life has not been normal at all for the last month or so. Since being diagnosed back in 2003 I've had to make so many changes to my life. I can no longer work full time, I don't have the social life that a 'normal' 28 year old has blah de blah and continually adapt. I can understand that I can do 'normal aspects' of a 'normal life' but not the way that a healthy person can. I've managed to get a degree and ma since my diagnosis which I proud of but it was no easy task. I sometimes wonder if they have to be so politically correct and with the disability rights movement they say these things like you can lead a normal life but its just tokenism! There you go my rant over! Thanks for raising this hot topic.
Take care
Luv Kelly

sharmaine

Hi
It amazes me when the medical profession make such bold statements! Is he/she aware of what your job entails? In my experience of OA things get worse not better and mobility goes downhill. A friend of mine has had a painful back for years and the doctor also put it down to depression that was without even giving him an x-ray! After a couple of years he pushed for an x-ray and it revealed that he had curviture of the spine and the pain was caused by trapped nerves. His job as a builder suffered as a result.
He got depressed as a result of the pain and the fact that he couldn't provide for his family.

If you have pain surely something must be wrong?

I can understand why you are upset.

Keep going back - don't give up or better still change your GP.

Sharmaine

carol101

When i was diagnosed,after 18yrs! I was told that the bottom bone in my spine had worn out and had grown a spur. The spur is taking up the room where the nerves are and sometimes (luckily not that often) it catches my nerves and the pain is so intense all i can do is scream, and i mean SCREAM! I frightened my hubby 1 morning at 3am as i work up screaming, i just couldn't move, i felt like i was being stabbed. But even when that doesn't happen i do get flare ups of back pain which i suppose is like a cramp pain. I was also told that the spur is actually growing backwards and back INTO my spine. I'm not sure if this actually causes pain or not. My Dr said there is a problem, so he's acknowleged that and he did tell me it will get worse but said i can still live a normal life! Well if that's normal, he is welcome to it and i'll have my abnormal life back!

My Dr does know what my job entails, an he did say that if i'm in pain (i presume he means a flare up) that i shoudn't stand for 8 hours or do any heavy lifting. Surely as my bone is wearing anyway, heavy lifting and constent bending will make it even worse? I must say though, work have been fantastic with me, I don't have to do the heavy jobs if i feel i can't do them and i can sit down if i need to (my job is a lot easier standing though) My work care more that the Dr's i think!

I have only been with this Dr a short while and only after my 2nd visit to him with back pain, he sent me off for x rays and got me diagnosed. I am 35 and have suffered with back pain on and off since i was 17 so at this stage i am a bit reluctant to change Dr as he does seem to be the 1st 1 to take me seriously.

Like i say, i just wish they would say something like 'to a certain extent you can live a normal life but with some things you will have to limit yourself and you will have a few bad days'.

Carol XX

carol101

I've just had another thought while talking to hubby. Like i said in my 1st post, i can not do gardening for more than 10/15 minutes as it makes my back hurt.

If that is normal, i wonder how long it takes all those gardeners to earn a days wage since they obviously only work 10 minutes a day!

I can see this rant going on for ages!

Carolxxx

robertls

Hiya Young Lady......

You should get a job as a 'Party planner'...... :P

Rob x

sharmaine

Hi Carol
Do you think doctors ever read these postings? It may improve their approach to arthur sufferers. God that sounds awful what you've had to go through - one of the worse things in the world as far as I'm concerned is back ache. But to have what you have must be torture. Can they do anything to remove the spur or is it too dangerous?

Normal - now there must be thousands of connatations on that one!
I'm certainly not 'normal' since I've had OA!!!!!

Thank goodness your employers are understanding.

I do hope your doctor proves to be a good one. It took me moving home/areas to find a good one. She's been fabulous. Keep on at them. It's not fair that you have to be in such pain and I really feel for you.

To end on a lighter note and for all those 'normal' folk.......

Abnormally yours,
Sharmaine





quote="carol101"]When i was diagnosed,after 18yrs! I was told that the bottom bone in my spine had worn out and had grown a spur. The spur is taking up the room where the nerves are and sometimes (luckily not that often) it catches my nerves and the pain is so intense all i can do is scream, and i mean SCREAM! I frightened my hubby 1 morning at 3am as i work up screaming, i just couldn't move, i felt like i was being stabbed. But even when that doesn't happen i do get flare ups of back pain which i suppose is like a cramp pain. I was also told that the spur is actually growing backwards and back INTO my spine. I'm not sure if this actually causes pain or not. My Dr said there is a problem, so he's acknowleged that and he did tell me it will get worse but said i can still live a normal life! Well if that's normal, he is welcome to it and i'll have my abnormal life back!

My Dr does know what my job entails, an he did say that if i'm in pain (i presume he means a flare up) that i shoudn't stand for 8 hours or do any heavy lifting. Surely as my bone is wearing anyway, heavy lifting and constent bending will make it even worse? I must say though, work have been fantastic with me, I don't have to do the heavy jobs if i feel i can't do them and i can sit down if i need to (my job is a lot easier standing though) My work care more that the Dr's i think!

I have only been with this Dr a short while and only after my 2nd visit to him with back pain, he sent me off for x rays and got me diagnosed. I am 35 and have suffered with back pain on and off since i was 17 so at this stage i am a bit reluctant to change Dr as he does seem to be the 1st 1 to take me seriously.

Like i say, i just wish they would say something like 'to a certain extent you can live a normal life but with some things you will have to limit yourself and you will have a few bad days'.

Carol XX[/quote]

carol101

The Dr has said that i could have the spur removed but it will grow back so not worth going through a risky operation (risky as it's so close to my nerves). He also said i could have steriod injections into my spine but since my back is very tender to the touch, he doesn't think i would be able to take them plus apparently the steriod would paralise the base of my spine but arthur would start moving upwards. ( The problem at the moment is my very bottom bone of my spine although the 'cramp' pain can go right from my shoulders to my (now how do i say this) bum!) I littery do get a***ache at times. My husband has given me a cuddle before and forgotten himself and squeezed a bit hard and i've been in agony for hours afterwards. It seems i'm just on pain killers when i need them for the rest of my life.

It's not all doom and gloom though, i would say physically i'm about 80% of the person i was. On a good day you wouldn't even know i had arthur!

Carol X

dachshund

Hi Carol.
I Have oa in the spine and a disc pressing on a nerve in my spine it ache's all the time and it's in my hips as well so my legs ache.
i'm sorry to go on it can get on top of you as well never mind i think arther can get to any body even the royal family.
joan xx

carol101

dachshund wrote:

Hi Carol.
I Have oa in the spine and a disc pressing on a nerve in my spine it ache's all the time and it's in my hips as well so my legs ache.
i'm sorry to go on it can get on top of you as well never mind i think arther can get to any body even the royal family.
joan xx

Joan, i don't have it in my hips but i find my legs also ache at times. I never knew that arthur came as a 'package' until i met him

Carol XX

carol101

It wouldn't hurt the Drs to join this forum and read how we REALLY suffer! Let's face it, most of them don't listen! If they were to read all these posts and see that we are all saying the same things then maybe they would finally understand.

I actually gave my manager the address for this website and he said he has found it most helpful. That is probably why he is so understanding!

Carol XX

debatat

Hi Carol, forgive me if this has already been mentioned, but have you asked to be referred to the pain clinic? I have OA of the spine and it is pressing on my spinal cord. I can't stand or walk, it is agony. The pain does really get you down. I have been told I need surgery, but am not keen at the moment. I have been referred to the pain clinic, maybe for injections. I am hoping they will sort my meds out as well as I take so many it is ridiculous. They can prescribe patches and long acting meds, refer you to physio, OT and all sorts. It might be worth you asking.

Also who told you it wasn't worth operating on? If it was a gp, you could ask to be referred to a neurosurgeon or orthopaedic consultant, for a second opinion. They are the experts.

Hope this helps

Debx

carol101

It was my GP who said it wasn't worth operating on. And as for a pain clinic, i didn't even know they existed until i joined this site. Sometimes i fell my Dr has the 'you've got OA, so what?' attitude.
He's told me to make sure i have all my meds with me and just take them when i need them (which is nearly every day) but other than that, there is nothing he can do for me. Very helpful!

Carol X

debatat

Carol, I would go back and demand a referral, it is your right. I was told to always take pain meds so it keeps level topped up, to get maximum effectiveness. Obviously I am no doc, and I am unsure as to why your doc said as and when. As you are so obviously suffering though, it would make sense to be assessed by a pain clinic.

Deb x

carol101

Deb, maybe that's why i'm feeling i can't cope. Because i'm not taking the full dose of pills. I might try that, as long as i don't overdose i can't see it doing any harm.

I just get fed up with keeping going back to the Dr, as i'm sure you all do.


Carol X

debatat

Carol, I take slow release morphine, gabapentin (nerve pain), tramadol, robaxin (muscle spasms), steroids, naproxen and amitriptyline at night. I am still in pain. There are so many options availoable, you should not have to suffer. Chronic pain is so debilitating.

Deb x