On my own with Fibromyalgia

[HarleyBabe]

I’ve been diagnosed with Fibromyalgia through my specialist at the pain clinic. Since then I received a letter saying I’ve been released from his care and passed to my GP.. I’ve been down ever since as I know I’m now on my own and left to deal with this as our GPs since the start of COVID up until now continue not to see patients….am I alone or do others find themselves in this situation. I was given an NHS leaflet at the pain clinic on Fibromyalgia and that’s it 😢😢😢

[Hidden]

I had to push to get painkillers. The nhs is overwhelmed so think most of us newbies are in the same boat. I have to wait 33 weeks to see rheumatologist! That's October for me! Xx

[Hazel_Angelstar Administrator FMA UK Staff]

Hi and a warm welcome to the forums. You can find general information on fibromyalgia at our website fmauk.org and our patient information booklets at fmauk.org/publications

Unfortunately, many people are like yourself given a diagnosis and no further follow up

[Blearyeyed]

Oh , dear Harley,

First let me welcome you and let you know you are not alone.

You have us , a group of Faraway Fibro Friends who have been where you are now and will give you lots of support and advice about how and where to get help.

Like Hazel Angelstar says , look at the Charity website and look through old posts on questions you need help with.

If you look on your post page now , you will see a list of 'Topics' on the right hand side , just tap on the topic you are interested in to find things to read.

If you have any specific questions to ask about Fibro , meds , mental health , or if you have a flare and just need to talk , post questions here as many times as you need.

You are not alone with medical care either. Your GP will have received your diagnosis from the Pain Specialist . They should have recommended to them some medication or other therapy that you might need.

You do usually just get discharged back to Primary Care after a diagnosis like you have , it's wrong but it is typical.

When you have read your pamphlets and have a better idea of what Fibro is , and what you can use to help , ring your surgery and ask for a phone appointment with a GP about needing help for your Fibro.

You can ask them to refer you to physio , and ask if you can try pain relief recommended for Fibro.

Many of the first treatments can be organised on the phone.

Be polite but firm with your GP , if you explain what you know , or what you need simply they will be more willing to help even if they are lost about Fibro themselves.

It's a good idea to write down all your symptoms and what questions you want to ask in your appointment so that you don't get muddled by being nervous , or forget something.

Be honest about having Fibro with family , friends and work. Just explain in simple , positive , words what you have and what it can make you feel ( show them the pamphlet too ) .

Explain that sometimes you will need help with some chores and activities or might need to take a day off or cancel a social event if you are having a bad Fibro day.

You can get a lot more understanding and support from your proper friends if they know what's going on.

Your ' Fairweather' friends might make less effort to help or see you , but that is no great loss ( trust me!).

Pace your daily activity with more breaks and rests in what you do , and don't try to pack too much in in one day , that helps reduce the symptoms and pain.

When you are ready , try joining an online or local group. They usually know more about what will help you from their experience , and they can give you tips of where to go for help in your area.

Most important you can protect your Mental Health because you can share your feelings with other people who understand what you are talking about. Things that you might feel self conscious about sharing with Family or Friends in case it worries them ( or if they are not very sympathetic).

It will take time to adapt and adjust from your ' Old Normal' into a ' New Normal' but you will get there . Don't forget , You are still You , the interesting , unique and beautiful You that you have always been. It's just what you do that might change not who you are.

Keep posting and take care , Bee x

[GrumpyTired]

Hey HarleyBabe, Lot's of good advice in the replies above.

Just wanted to chip in and say your not alone with your experience at the GP's - sadly the leaflet experience was how I was finally diagnosed/told too and that was long before covid!

It's unfortunate but the GP's don't really know what to do with us sometimes. I think it's a symptom of the medical system as a whole, they focus on what they can treat and when they come to us lot that need some experimentation and longer term support we don't quite fit with their system.

Hope you find some relief and a way to work with your doctor x

[Dizzy2day]

The problem with FIbro , there is no PILL no treatment to cure. Your GP can only treat each Symptom. The NHS recommend less pain killers (lower dose or withdrawal strong medication) as THEY think painkillers don’t work on Fibro. At this time I’m part of a group on the internet, this was arranged by my GP , its run by the mental health unit, we talk about stress mostly, depression, your mental well-being , lack of sleep. So trust your GP talk and accept what’s on offer.

[RWilliamson]

Sorry to hear that you have been discharged back to your GP. Could you see if your GP can refer you to a pain management clinic? They don't want to give medications then how else do they expect you to manage your pain without some specialist support! I have recently moved from Manchester to Liverpool and have noticed a huge difference in care in Liverpool (for the better thankfully) Is there any other surgeries you could try if your current GP isn't being supportive x

[Whiteclouds]

Hello HarleyBabe, Sorry to hear your doctors are not seeing patients. My doctor sees me although some time I get a message to take a covid test as a precaution. I think I would insist on seeing a doctor and if you still cannot see anyone ring 111 if in extreme pain. You’re not alone as this group will give you support we are all pain warriors with fibro. Sending hugsx

[LordGodAlmighty]

2 weeks or more just to talk on the telephone to a doctor who is pushed to their limits. I understand your plight. Telephoning 111 is very helpful but may still leave you frustrated. Seems the only attention you get after a long wait is A&E.I had a very strong discussion with my GP who was no use and patently did not understand what Fybromyalgia is. I was deep into what I considered a bad flare up. It was on Health Unlocked where I found mention of drug for nerve blockers, gabapentin and pregabalin. I suggested a nerve blocker to my GP. In several days she rang back and suggested pregabalin, it's been excellent so far. I have mobility with far less pain than before. With a couple of paracetamol and codeine, morning, mid afternoon and night, my condition is improved.

I also taught myself to imagine that the is no pain, it isn't a total success but reduces the pain as does being positive.

Sometimes ignoring pain is not so good, it got me a seven week visit to hospital and a triple bypass lol.