Diagnosis

[Violet55]

Hi, I'm new to your forum and have enjoyed reading some of the posts especially as they make me feel quite 'normal.' Like everyone here I've suffered with varying degrees of pain over the years; migraine since I was 16, RLS, spondylolisthesis. Many years ago a GP told me I had Fibromyalgia and all he could tell me to take was paracetamol for the pain and learn to live with it. Which is basically what I've done, then I had back problems which was initially attributed to 'well we all have back trouble from time to time,' and prescribed amitriptyline and other pain killers. To cut to the chase, I eventually saw a neuro surgeon who diagnosed spondylolisthesis along with other spinal conditions and I've since had 2 spinal operations. Consequently when I visit the GP any pain from the waist down is put down to my back problems and other pain has also been blamed on this too as 'referred pain.'

I still take morphine as and when I need to and try to take it as little as possible, saving it for when I absolutley can't bear the pain/discomfort any longer.

Recently when I went to see my GP she told me that the pain I'm having is "Fibromyalcic pain" she said "there's no magic pill that I can give you which will help and referring you to a rheumatologist isn't an option as they only see patients occasionally in extreme cases as the drugs they use to treat the condition are extremely powerful and not what you really want to be taking. (!!) It's not something which is easily diagnosed and I don't like to put this label on it as there is no cure for it, it's a matter of lifestyle adjustment." She went on to say that I should let the physiotherapist and occupational therapist at the Pain Clinc I attend know. (Referred to Pain Clinic for generalised pain resulting from spine/migraine/CTS etc.) I left the surgery feeling stunned tbh. If my own doctor can't help me what hope do I have? I know it's something which isn't cureable but surely I should have the support and 'extertise' of my GP. Have thought I maybe should make an appointment to see a differnt doctor in the practice.

Apologies for the very long-winded post!

[fenbadger]

Morning and welcome.

Sadly your story is not unusual as you've already spotted.

Please bear in mind I'm not a doctor and this is only an opinion:

In extreme cases people have changed doctor but it is a big move and do you know what you're going to?

As to pain control there is more than just paracetamol, something to be talked over. I find codeine useless but some of us are on amitriptyline and other anti depressants. They seem to work on the neurological aspect. It will probably help to talk to physio. You may find physical movement (by which I don't mean strenuous exercise) helpful. I do.

I'm a little surprised Dr doesn't want to go down the rheumy route. It's by no means routine but neither does it need to be dismissed out of hand.

Yes, you are normal. There seems to be a few of us with multiple conditions and this may be no coincidence. There's also a great sense of humour and it's quite fun being qualified to laugh at ourselves.

Loads of gentle hugs -don't want to make you scream in pain

[Violet55 in reply to fenbadger]

Hello Fenbadger and thank you for your lovely welcome message.

I have seriously considered changing doctor and checked out other surgeries, but it is, as you say, a big move and one wonders whether it's a case of 'better the devil you know.' The jury's still out and I've certainly not ruled it out by any means. Have an appt next week again, so we'll see where that takes me.

As for amitriptyline etc., I took that for a while, but it doesn't agree with me, I do take fluoxetine. Other drugs like gabapentin and pregabalin are others which I can't tolerate either, unfortunately as I believe they give quite good results.

Goodness knows what we'd do if we didn't have a sense of humour, thank goodness we can laugh at ourselves..........oh and woe betide anyone else who dare to when in the thoes of a particularly nasty painful episode, haha!!

Thank you for the hugs.............am sending you hugs too and lots of pain-free vibes as well

V x

[fenbadger in reply to Violet55]

You have our support but only you can make these decisions. Go well.

Thanks for the vibes

Watch this space, there's plenty of distracting fun here, too.

[Betty67]

Sorry you are going all of this but I don't think a second opinion is out the question. My most helpful treatment had nothing to do with drugs so give GP a second chance and ask again about a rheumatic specialist.

Not curable - yet but is manageable.

[Violet55 in reply to Betty67]

Hello Betty67, What a lovely message, thank you very much. I have an appt next week with GP and will certainly ask about rheumatic specialist. Very good advice.

Thanks again.

V x

[Betty67 in reply to Violet55]

my pleasure V

[Hidden]

Morning and Welcome, You have joined the right forum for information and a giggle

There will be someone who will come along soon and point you in the right direction for information.

Reading your post is sounds oh so familiar. You go to the doctors backward and forward and finally get a diagnosis and then shown the door. I have found that it took me to see the doctor and be prepared to ask questions and tell them when I thought something was not working. As you have already been told, changing doctors is another way to go, or even a different doctor at your surgery and a second opinion never hurt anyone.

I hope to see you around the forum

[Violet55 in reply to Hidden]

Hi Tirealot40, (love your name btw-although I know I shouldn't!) It's so good to see such sound advice here and to know there's others (obviously I did know I wasn't the only one suffering....derrr!) feeling just the way I do. When there's no one within your close circle who has this condition it's difficult to explain and to really make them understand just what it's like.

Doc's appt next week, so we'll see what happens from there, but I feel more confident now going to see him having been on this forum.

Look forward to seeing you again too.

V x

[Hidden]

Hi i suffered lower back pain for years but it was nothing to do with my back . It was my womb it had tilted and was pressing on spine( only found out due to other problems) .The GP was amazed when i told him this he had not considered that could be the cause .Since then two more of my friends who went to the same docs had same problem. Not saying this will be case for every woman but it is worth asking next time you see Doc.

[Violet55 in reply to Hidden]

Hi leejohn, Thank you for that advice. Ooh I can imagine how painful that must have been and incredible how you had to suffer for so long before finally having it diagnosed.

Just as a side subject, I had a similar experience many years ago........briefly:- had been complaining about terrible pain in my lower left leg - GP said couldn't find any reason for it - went to see him 3 times as it got worse not better and was limping terribly. Even went to A&E once, they didn't even x-ray it! By chance following a knee op the orthopaedic surgeon asked why I was limping on the 'wrong' leg - I told him and he sent me straight away for x-ray. He called me in, pointed to the x-ray on the wall and said that's why you're limping, you've 2 broken bones in your leg!! I'd been walking around like that for 2 months - agony. Tibia and fibula were broken and he had a heck of a job to re-align them to re-set them. Was in plaster for weeks.

Anyway I digress, sorry!! I had a hysterectomy several years ago, so unfortunately that's not something I can say is causing the back problem. Trapped nerves are a bummer though aren't they and difficult to treat.

Thanks again.

V x

[clare_hart]

I am wondering why your GP won't give you anything else if you already have morphine! Guess you just have it left over? I use hydrocodone and it is not too addictive a drug. Though here in the US, they have just tightened up the use of it, requiring a new Rx every time, no automatic refills anymore.

I use it whenever I need it. I used to use it less - I think I wanted to prove to my doctor that I was not abusing it - but I realized that I don't have to just grin and bear it and wait till the pain is so severe I can't stand it. Even though my Rx says severe pain, who is to judge what that is for each of us, and I shouldn't deny myself when it feels like it to me? If other measures, aspirin, paracetamol, relaxation, moist heat, aren't working, then I don't hesitate to take the vicodin.

I agree with those who suggest you may need to see a different doctor. You're doing the right thing asking for more info on the forum. You can arm yourself with that when you see your GP next. Maybe you'll get more cooperation if you have more information and put your foot down. But as others have said, doctors often don't understand fibromyalgia (for many reasons) and sometimes think we are exaggerating, grrrrr.

[Violet55 in reply to clare_hart]

Hi Clare_Hart,

Thank you for your kind message. I am prescribed morphine regularly and do have it 'repeat prescription.' Like you I do exactly the same not wanting to use it too regularly so as not to make to doc think I'm over-using and also, as I've said, I don't want to become accustomed to it. I also take tramadol when I need to. Meds like gabapentin, pregabalin, and amitriptyline just don't agree with me, unfortunately.

Sadly you're right some doctors do sometimes think we're exagerating and don't understand which is so frustrating, if they don't know/understand what do we as patients do? But yes, I feel so much more confident having found this forum and all of you on here who have been a great help with your advice and comments. I'll be able to see my gp next week with a list in my hand!! I can picture his face now, he won't know what's hit him, haha!!!

Many thanks Clare.

V x

[TheAuthor]

Hi violet55

Welcome to the forum and it is wonderful to make your acquaintance. I am so sorry to read of all the pain and suffering that you have endured and I genuinely hope that you can find some resolution and relief to these issues.

I look forward to seeing you around the site.

All my hopes and dreams for you

Ken x

[Violet55 in reply to TheAuthor]

Hi Ken,

Thank you for your warm welcome. I have to say that I'm so pleased to have found the forum and the people I have 'chatted' with have been so welcoming and helpful.

Many thanks for your kind thoughts.

V x