Setting up treatment plans and getting reviewed.

All your fibromyalgia experiences, questions and answers.

Moderators: perseus, *Lisa*, FluppyPuffy

Setting up treatment plans and getting reviewed.

Postby ToughCookie » Wed Aug 27, 2014 10:45 pm

Hi everyone


I was diagnosed in May after being referred to a rheumatologist who ruled out arthritis and told me they thought I had fibro. I had an isotope scan just to make sure I didn't have any inflammation and then fibromyalgia was confirmed and I was sent back to my GP.

I was started on amitryptiline 10 mg by my GP and then pretty much left too it. Apart from being told to up my dose to 20 mg, which is my current dose, I've not really had any further direction or review.

I have had a pretty nasty flare up of crohns disease recently (inflammatory bowel Disease) and so much of the focus has been on getting that under control. And it's been tricky trying to tell what symptoms are what condition.

Recently I've noticed a surge in my joint pains again. My back, hips, neck and shoulders have all becoming increasingly painful. I'm also really struggling with fatigue, although that's a mixture of fibromyalgia, crohns and meds I think.

To complicate things more, I've just started an immunosuppressant medication for my crohns which has the potential to cause joint pain when first used.

So I'm really struggling to work out where I am with everything and what to do next.
I know there are other medication options but want to keep my meds as minimal as possible, since I'm already on amitryptiline, steroids, immunosuppressants, pentasa (an anti inflammatory for crohns) , omeprazole, cerazette, vitamin D3, buscopan (anti spasm medication for cramps etc) and paracetamol and tramadol as needed and I'm only 21. I know there are options like pain management clinics or physio but I have no idea how to access them.

How often do you get seen in general? Do you call the shots regarding how often your seen and what treatments you pursue? Is everyone eligible to referred to pain management clinics or is there a criteria to meet?

Sorry for the long winded post and thanks in advance.
Nicola - 21- South Wales - diagnosed with Fibromyalgia 05/2014. - Also have -Crohns - Asthma- Coeliac disease - Osteopenia - High blood calcium - Tachycardia
User avatar
ToughCookie
UKFM Member
 
Posts: 15
Joined: Sat Jun 14, 2014 10:41 pm

Re: Setting up treatment plans and getting reviewed.

Postby carolad » Wed Aug 27, 2014 11:10 pm

It seems to very much depend on the individual GP. My GP does nothing apart from sign my repeat prescriptions....I'm on Amitriptyline and Tramadol. So I've just given up on the NHS route. I see a fantastic private physio (I found the NHS ones were useless) and I am looking into other things that I can do to help myslef eg diet, supplements etc.

When I asked my GP about referral to a Pain Clinic (for back pain rather than fibromyalgia), he said he didn't think there would be any point because he could try me on different drugs to see what helped. I know a Pain Clinic deals with more than painkillers, but if he doesn't want to refer me, there isn't much I can do about it!

But from reading people's experiences on here, some GPs seem very good and are very proactive, referring to all sorts of people who might be able to help...you might be one of the lucky ones :)
carolad
UKFM Member
 
Posts: 415
Joined: Fri Mar 07, 2014 12:04 am

Re: Setting up treatment plans and getting reviewed.

Postby aziriphale » Wed Aug 27, 2014 11:12 pm

Hi

ask your doctor if you can get referred to a pain clinic, he or she should do it for you
aziriphale
UKFM Member
 
Posts: 51
Joined: Sun Aug 17, 2014 10:37 pm

Re: Setting up treatment plans and getting reviewed.

Postby rich44 » Wed Aug 27, 2014 11:48 pm

It's taken me years to get a gp to refer me so don't take any rubbish off of them & insist
rich44
UKFM Member
 
Posts: 389
Joined: Sun Nov 03, 2013 9:13 pm

Re: Setting up treatment plans and getting reviewed.

Postby carolad » Thu Aug 28, 2014 12:33 am

rich44 wrote:It's taken me years to get a gp to refer me so don't take any rubbish off of them & insist


Yep! It isn't in my nature to be pushy but it is the only way to get anywhere in this case - if they can fob you off, they will :)
carolad
UKFM Member
 
Posts: 415
Joined: Fri Mar 07, 2014 12:04 am

Re: Setting up treatment plans and getting reviewed.

Postby Lunacy » Thu Aug 28, 2014 1:01 am

The only way is through your GP but you have to be insistant about it.
For joint pain they usually go down the steroid injection route
and assess what drugs you take. TRAMADOL is the
strongest prescription pain killer, I have been told that so many times
My GP wants to try alternative medicines. Does anyone have any suggestions?
Lunacy
UKFM Newbie
 
Posts: 1
Joined: Tue Aug 12, 2014 10:09 am

Re: Setting up treatment plans and getting reviewed.

Postby rich44 » Thu Aug 28, 2014 8:19 am

Tramadol the strongest prescription available? Are they taking the pee?

There are lots of stronger pain relief available, ok they don't like prescribing them but there are options there.

Tapentadol, Butrans patches, morphine patches, Fentonyl patches, modified release morphine tablets and probably more.

It's a case of only being prescribed the bare minimum of what you need to cope as they're addictive and you'll only end up having to increase the dose with time but if tramadol isn't helping there are other options.

Then you just have the problem I have getting them to flipping listen that the pain is driving you bonkers.

Definitely sounds to me like you need a pain clinic referral.
rich44
UKFM Member
 
Posts: 389
Joined: Sun Nov 03, 2013 9:13 pm

Re: Setting up treatment plans and getting reviewed.

Postby FluppyPuffy » Thu Aug 28, 2014 11:30 am

Is your GP a decent one Nicola??? If so, explain what you've been reading about on here, and the various things mentioned, and take it from there. Alternatively, you could talk to your IBD team about it. Whilst they may not be able to refer you, they could possibly contact your GP with suggestions/recommendations.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

If your dog doesn't like someone, then you probably shouldn't either
User avatar
FluppyPuffy
SITE ADMIN
 
Posts: 12719
Joined: Mon Jun 08, 2009 11:25 am
Location: Living Life On The Edge.......Of The Norty Step!!!

Re: Setting up treatment plans and getting reviewed.

Postby ToughCookie » Thu Aug 28, 2014 11:30 am

Thanks everyone.

I'll try and get an appointment with one of the better doctors at my GPs, there are some I know will do everything they can and others that will just do the bare minimum.

Im used to doctors trying to fob me off. For almost 5 years I was told my crohns was just growing pains or girl pains or even a strained muscle. That's why I wanted to see what other people are getting etc so I can go in knowing exactly what my options are and not be lead round in circles.

I know there are stronger painkillers available, but I feel tramadol is strong enough. I don't take it regularly as it makes me even more tired, and because having two painful chronic illnesses means I know I'll need options in the future too. Oramorph was discussed with me during my last hospital stay for crohns in June. My crohns team are keen to avoid me being on that at home for now, because they are very aware that I will need pain care for many years to come, so going to morphine now would leave me some what restricted, plus I could need further surgery, and they also have concerns regarding dependency.


I currently use tens, and think physio is worth a try. I had it for my shoulders when I was in my teens and it really helped. It's just getting that ball rolling that's tricky.
Nicola - 21- South Wales - diagnosed with Fibromyalgia 05/2014. - Also have -Crohns - Asthma- Coeliac disease - Osteopenia - High blood calcium - Tachycardia
User avatar
ToughCookie
UKFM Member
 
Posts: 15
Joined: Sat Jun 14, 2014 10:41 pm

Re: Setting up treatment plans and getting reviewed.

Postby Chickenosaurus » Thu Aug 28, 2014 1:08 pm

A good pain management clinic should deal with a whole range of techniques to help manage pain. I went to one in Edinburgh 14 years ago - it was 1 afternoon a week for about 12 weeks and was run by a team of a nurse, psychologists and physiotherapists.

It covered medications, pacing, lifestyle, exercise, relaxation and anything else which could be useful. And it really was useful!
I've recently done an online Coursera course on Pain management from the University of Minnesota. It promised to be a 'paradigm shift' in the treatment of chronic pain. While there were some useful parts of the course, I had a real problem with the whole set-up, ethics and some of the advice within it, so I would advise caution to anyone who does it in the future!
Anyway, this revolutionary new approach was basically what I'd done all those years ago!

Have a look around your local authority's online stuff and see if they have anything on chronic pain. For example, mine says -

"We are a multidisciplinary team of Doctors, Nurses, Physiotherapist and Psychologists and we provide a wide range of treatments/therapies for patients with chronic pain problems. We also provide information, education and support to patients, their families and carers.
Working within a bio-psychosocial model of pain management, we aim to improve individual functional performance and quality of life, modify the perception and response to pain, and enhance self management, thereby reducing reliance on the health care system."

So if your GP says there's nothing else they can do, wave that at them and ask to be referred!
Hope you get to see a better GP.
Chickenosaurus
UKFM Member
 
Posts: 34
Joined: Sat Aug 09, 2014 11:03 am


Return to Living with Fibromyalgia

Who is online

Users browsing this forum: No registered users and 11 guests