Don’t know what I should have expected - Fibromyalgia Acti...

Fibromyalgia Action UK
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Don’t know what I should have expected

Craftysue70
Craftysue70

Hi all. I attended an appointment with the rheumatologist to get a fibromyalgia diagnosis last week. I went in and he asked me a few questions. He said it was fibromyalgia which I knew anyway. My question is I was told by my go practice that the rheumatologist would sort out my pain management as well as other things. My rheumatologist discharged me the same day saying this is what my life will be like from now on. I don’t know who to turn to as the pain meds I’m on are not helping and my gp will not give me enough to last the full month so I have to go without quite often.

26 Replies
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I think in the UK that’s what the rheumatologists do, give a brief examination, call it fibro and pass you back to the GP. They don’t actually seem to do a lot for all that training. Your GP shouldn’t leave you without pain medication. Can you request repeat prescriptions about 5 days before you run out ? Only reason I can see for limiting replacement time is if a patient was overdosing. ( e.g. prescribed 60 tablets on 1st of month @ 2 per day, and the patient requests more after 10 days)

I think GPs can provide a medication review appointment, might that help ?

Hi sue , the very same thing happened to me , although i cant take any pain meds due to a heart condition! ....i was so angry at how i was almost dismissed by the Rheumatologist that i went back to the doctor , i told him that as this is a long term condition i was counting on him to have my back and that i needed something more , i had to 'suggest' he referred me to the pain management clinic ! It seems strange as they are all in the same building the the Rheumatologist didnt refere me straight over, but its seems if you have fybro you have to fight for every little thing you need , that was in February and im still waiting , last week the occupational Dr at work said i should get back in touch with them , he said it would offer only an holistic approach, exercise, councelling etc , which is fine if it gives me the tools to carry on , i am having to consider early retirement as even going down to 3 days a week is too much ...long story short i rang them and they had no record of the referral, rang docs and they said it had been done , talked to secretary and she apologised and said i should hear back within the week ...still waiting so ringing again today , sadly we have to take ownership of our condition and fight for what we belive we need ...go back to your doctor and ask for more ...good luck and let me know what happens next for you .jx

Hello!

I have found that once we have a diagnosis, then we have to take charge of our own management, in other words we have to become "expert patients"!!

I would suggest returning to your G.P. and ask about referral to pain management clinic, pain management courses, hydrotherapy, etc.

Also may I suggest looking at website called paintoolkit.org which has information about living with chronic pain. There are a list of "tools", that explain how to manage your symptoms.

Learning to live with fibromyalgia is the hardest thing I have ever done, accepting I can no longer do all the things I used to do, pacing myself, learning not to feel guilty, learning to say NO when others expect too much from me. It is a very tough journey. Hope you get some help from your G.P., Take care xx

Rai_Iwa
Rai_Iwa
in reply to phlebo123

This is a brilliant response, well said, and I fully agree.

Rai xxx

YASMINTINA
YASMINTINAFMA UK Volunteer

Hi there , could your doctor review your situation and trial something else, it does seem reading here on the forum trial and error with meds until we get something that helps or suits us more, I know my doctor prescribed my codiene on the understanding that I do not use it every day which I don’t, but they do tend to keep an eye how often the prescriptions go in at our surgery. It’s not easy living with fibro pain we just want to make life liveable from day to day. Xx

Dont rely too much on the NHS helping with fibro diagnosis. Not much to offer beyond pain killers . Pain management was arranged on a 5 day per week for 6 weeks approx 6 hrs a day . I said if i could do that i could work full time.

It started at 9 am so you ended up as a commuter fighting your way thru peak hour. The course was just various health professionals lecturing on how you can do everything despite your pain & fatigue. Exercise was good ? After one day of this i was bed bound for a week. Because i was 'ill' i was signed off the course & had to wait nearly a year for another

I now get all my info from the internet & the members of the local support group i joined.

Learn as much as you can about your illness & manage it the best way for you. Dont rely on non-suffers to understand. They usually cant differentiate between tiredness,fatigue & chronic malaise.

Good luck

Rai_Iwa
Rai_Iwa
in reply to Vivalaviv

Dear Viv,

While many people seem to have a rough time with pain management like you I would like to highlight one scheme that is utterly brilliant.

INPUT therapy at Guys and St Thomas’s hospital, it is a five day in-patient course, then a very regular follow scheme, limited to 10-12 patients. They help with exercise, medication for FM management and pain management.

At the time I went to the course I was on drugs of last resort such as methadone to control pain, their mix of therapy, mindfulness and constant monitoring really helps to get to a solution.

The most important things I have ever done to manage my FM are,

1) change GP till you get one that understands and only see that GP for everything, I.e. flu etc.

2) keep seeing different rheumatology and pain management consultants till you get the right ones. The NHS lets you see who you want to see, not just the first name on a list.

3) document everything, know your disease, and then write out lists of questions, possible medication changes etc before each appointment.

4) if possible arrange all your hospital consultants in one hospital, they can then easily see what the other is doing re meds or bloods etc.

I’ve seen rheumatologists that say FM is all in the head, I just kept moving on to better consultants.

It does get better, good GPs and consultants are out there.

Rai xxx

Vivalaviv
Vivalaviv
in reply to Rai_Iwa

I was told by specialist that pain management is really to get people off medication which they may've become addicted to & into other ways to manage their pain. If you're not on the medication roundabout & you are using your own methods to manage then its really a huge effort for little reward.

After five years since my diagnosis i have realised that its all up to me. I just try & keep up with the research online. I believe there are some good results from LDN but when this becomes available ? Also cannabis helps but on the NHS ?

Rai_Iwa
Rai_Iwa
in reply to Vivalaviv

Dear Viv,

Okay so honesty time my parents suggested cannabis to me I went down the Amsterdam route and sort of self medicated. I say sort of because my GP knew what I was trying.

Cannabis helped in several ways for me, improved mental health, lowered pain response and allowed a lower usage of my breakthrough pain meds.

I would not advocate doing it yourself as quality, chemical composition etc, varies from product to product. Be that CBD oil or raw cannabis, I will say CBD oil is not as effective due to the lack of THC.

The research suggests that for FM, much like epilepsy, we need the THC content as well as the CBD and I’ve found little benefit from the oils currently available in the UK.

Given that the USA has relaxed cannabis laws, I do feel a lot more research will come out, hopefully enough to allow it to be prescribed for chronic pain.

Rai xxx

Vivalaviv
Vivalaviv
in reply to Rai_Iwa

Uk still very weird about cannabis use even tho mp's supposedly ok'd it try getting a nhs prescription . Have heard of people getting one thru a private doctor but no idea exactly what you get.

Tried cannabis oil & hemp tea but no joy. Seems the THC ingredient is key

Now trying edibles. Just some respite would be appreciated

Sorry to hear this, nothing has changed since I was diagnosed back in 2007. I too was referred to Rheumatology, I saw the lady that was head of the Physio department, I thought it would a Rheumatologist specialist. After sending me all over the hospital for bloods, X-rays etc I went back to discuss results with to be told I had Fibromyalgia, I asked what that was I was told as all tests had come back clear so Fibromyalgia is a name given to unexplained symptoms! I then had a booklet thrown at me and go home, that it would explain things and let family, work collegues and friends, nobody wanted to know. It makes my blood boil 😠😣we have to put up being treated like this. My new GP is treating my Arthritis with Morphine but as much I've pleaded with him he's not interested in the Fybro, says there is no treatment for it, funnily enough he's replaced my GP of 20 years and newly qualified. I have same trouble as yourself with meds, I have a beta blocker for stress to be taken as required, get 56 tabs to last 30 days but I can take up to 6 a day which doesn't last 30 days, I take 1 in a morning and 2 at night, that doesn't add up either. I ran out yesterday, told I can't have any more until 12th June and have to give 24 hours notice. I order meds online to surgery, they give a date you can order and there's a box available to tick to order, this is only made available from the date due, I phoned surgery yesterday to be can't have then until June and can't help. I have my PIP assessment next week and needed them to keep me calm. It is wrong how we are treated and have to beg for everything, just because we might not look ill or disabled we're expected to get on with it, good job we can our problems & fears on here.

I hope you get the meds you need and feel better soon. Take care🤗xx

Rai_Iwa
Rai_Iwa
in reply to Sue_64

Dear sue,

Please be careful with your meds, beta blockers and morphine are a potentially FATAL combination if you exceed your dose.

I know his sounds harsh, but you may need to find a better solution than blockers for your stress. I feel for you I really do, try a different GP, move practice if you have to. But, do get someone that can care for you and give correct advice, they do exist, I promise.

As I’ve moved round the country I’ve had five different GPs, but I’ve tried out loads till I got ones that knew FM and also allowed me the freedom to manage my dosages myself.

I’m classed as an expert patient, so I get a certain leniency, but you all deserve a good doctor, and good consultants.

I believe in you,

Rai xxx

Sue_64
Sue_64
in reply to Rai_Iwa

Thank for your advice, we live in a rural area and there is no other doctor near by and I don't drive, it's mostly taxi or my husband that takes me where I need to go if it's after he has finished work. I did make an appointment yesterday to see another doctor at our practice, she tends to be the one that refers you for tests etc and she listens. I started out on a beta blocker as I hypertension but it's also used for stress. My Husband retires in two years and we intend to move from West Yorkshire to East Coast, we have said we shall have to research doctors, hospitals etc before we decide where to go.

Have a good weekend Sue

Rai_Iwa
Rai_Iwa
in reply to Sue_64

Dear Sue,

I wish you all the best with the new GP, she sounds like she will at least try some things with you.

And I wish I had the sense to research doctors before I moved to Lincolnshire (old move, no longer there) I got a good GP but getting consultants was impossible. I distinctly being told that no neurologist was available for my needs, and the position had been empty for months...

Wishing you well,

Rai xxx

Al10
Al10
in reply to Sue_64

Yes, exactly! The online system is a problem. Sometimes we do run out early. Meds get used up, or spoiled even, in the heat, or somesuch. My meds are very strict about heat. I'm always grilled mercilessly by the surgery, if I try to order early. Then a GP needs to agree and of course if my GP is away they don't want to and days pass. I would never want to have to take meds which would leave me going cold turkey if I ran out. This NHS ordering system is way too unreliable.

Ask your go to see pain management. I have found them much more helpful.

Also here are my top tips for natural pain management:

If heat helps get some electric heat pads and some linnex (latter available on internet, Google linnex UK). Linnex has been my life saver but is very intense so start with a tiny amount and build up to what suits you. One stick lasts ages so it is quite cost effective.

Pilates, building up your muscle and core strength is vital, this will help to support your joints. Pick your class carefully. Ideally if you can find one run by a physio or osteopath. You need a teacher who understands your condition.

Rolling with massage balls is really helpful. Available online, also videos online.

Osteopath, go by local recommendation as some are better than others.

Acupuncture, again pick carefully and go by local recommendation.

Lighting process, do the course if you can afford it but if not buy the book on amazon by Phil parker. my daughter did this course and went from being almost bed bound due to pain to leading a much more normal life. It changed her mindset. She still has significant pain but much less intense and is able to do things like work part time and do open university.

It all depends what finance you have as some of these are expensive so you might need to prioritize.

Good luck and God bless

JadeMW81
JadeMW81
in reply to Newtali

Completely agree with this. I have spent a fortune trialling things & going for treatments over the years. I would spend my last pennies to feel better & I used too.

I’ve now managed to get my Fibro sort of manageable. Knowing my triggers, avoiding them, trying to be kind to myself.

There is always hope. Just be patient.

TENS Machine, Infra-Red Heat, Hot Water Bottles, Exercise Ball, should massager.. I have a cupboard full of contraptions which I’ve purchased. Some help, others are gathering dust.

Exercise & nutrition I’ve found REALLY helps too! The right diet is surprisingly helpful x

Rai_Iwa
Rai_Iwa
in reply to Newtali

Dear Newt,

Yes, yes, yes.

I totally agree,

Rai xxx

I suggest you write to your GP, explaining that, due to the difficulty getting appointments, that you need a regular supply of your medication, and explain the stress it causes, running out of meds, or being worried that you will do so.

JadeMW81
JadeMW81
in reply to Midori

And make a complaint through the nhs. GPS should start trialling different meds & combinations doing regular reviews.

They should also be able to look up information about specialists & other things to try.

This has made m blood boil! I am sick to the back teeth of being treated so poorly through no fault of our own! I have Ehlers-Danos Syndrome & Bipolar Disorder, in addition to Fibromyalgia & Arthritis. I also have Asthma, Hypertension & Hypothyroidism so my needs are extremely complex, however, I was only diagnosed with Ehlers-Danos Syndrome in 2017 & Bipolar Disorder in 2018. Before that, when I ‘just’ had a diagnoses of Fibromyalgia, absolutely everything was blamed on this, including my failing mental health problems. It wasn’t until I hit severe crisis that I was properly investigated & found to have my other issues! The problem is that other people & many, many physicians still do not really believe that Fibromyalgia is a very real & disabling condition. Most of us have times when we are simply too poorly & fatigued to fight for treatment that is rightfully ours. CrafySue 70, I fully empathise with the problems you are experiencing & I suggest, when you feel well enough, to make a complaint to your practice manager. Your doctor has acknowledged that you have issues requiring medication so he/she is clearly failing to treat you effectively by not providing you with enough of that medication to last you a full month. You have every right to ask for enough medication to follow your doctor’s instructions over the full month. I wish you all the very best with this, if your issues are not resolved following a complaint to your practice manager, inform them that you are going to take it up with your MP & do just that if you need to.

Gentle & supportive hugs,

Tracey x

Could u request to go to a pain management programme? I'm waiting for mine to come through.

Also, aswell as ur medication. I have a cream which is great which I put on my most painful area. It's made of natural plant ingredients (chilli's). Worth asking about. X

JadeMW81
JadeMW81
in reply to Jetblack1

Yes. You could. You actually don’t need a referral from a Rheumatologist for this. You can make a request through the GP & they can’t say no to any treatment request.

There are very long waiting lists for these appointments though.

Another thing you can do is look on the nhs website at the nearest hospital who specialise in Fibro or Pain Management & try to apply directly. Some are happy for this, others aren’t.

I’m unsure of anyone’s locations, but there are two places in London who are specialists who I have details for x

OMG! I’m SO sorry to hear that! That is extremely unprofessional & not fair!

There are a few things I would do.

Firstly, Write a letter of complaint about this Rheumatologist. Explain what happened. List the name of both your GP & Rheumatologist. Explain your situation & that you need help!

Take a look st this link.

nhs.uk/using-the-nhs/about-...

I have a few other suggestions of things which I have done.

I’ve had Fibro for 30 years, but it was undiagnosed until 2016.

I’ve done a lot of research, trials & treatments.

A lot of learning to find what works for you will be down to you, as different things help different people.

I started keeping a detailed medical diary, including feelings, pain levels, what caused flare-ups, treatment trials, diet, nutrition & exercise trials..

With regards to medication. The Rheumatologist should have suggested medications to start on. I’ve had so many different types of pills, strengths & combinations. Again you have to trial what works for you. The GP should then be reviewing the meds with you & if not working, another plan should be made.

Also in the U.K. there are treatments you can get on the nhs (also for limited amount of time.

One thing which REALLY helped me was Hydrotherapy twice a week. I think the nhs will offer only 2 (maybe more) sessions. But the waiting list is long. I was lucky enough to get it on my medical insurance at work & went twice a week!

I’ll drop you a message soon x

Stay strong. You’re a Fibro-Warrior 💜

Rai_Iwa
Rai_Iwa
in reply to JadeMW81

Dear Jade,

So very true, I agree with your post 100%, as for the hydro I think I was offered seven weeks, with multiple visits per week. My fibrofog is playing up today...

Again, well said you are a Fibro Warrior!

Rai xxx

I think if you contact your GP they will have your reply from the hospital and the medication that they have recommended for you . I went to rheumatology years ago and he didn’t prescribe anything . So I went to GP who had the medication there for to give me a script ..

Good luck xx

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