Saw my GP today, after the 4 week appointment wait! I was armed with a list of physical ailments and internet research. He did at least apologise for not being helpful. Had my 70yr old mother with me as her brain seems to work better than mine at times!
Got close to tears. Apparently it has to be fibromyalgia from the blood tests they did in January (1st Diagnosis 2 years ago). Cant offer any other tests and scans. I've done the years of physio tooing and froing and pain management. Told him about the intense random flare ups that have begun, potential meds to try. "brick wall"
I would like to know where I can offer myself as a Guinea pig to be poked and prodded etc.
Get to see my girlfriend tomorrow🙂, she gives good mental support, takes my mind off of everything. She has carers for her CP so its amazing to get a hand from them too. The drive is 2/3 hours but we now have a nice chair for me to relax in, next to her beast of a chair.
Love and soft hugs to all, Health.
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Health8472
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Hi, sorry to hear of your ordeal of waiting so long with no help at the end of it. Please request a referral to see a Rhemotology consultant who should examine you, talk to you & offer medication to help you manage pain. Think the meds are a bit of a trial & error at first till they find what works for you. I still have flare ups though but not as often. Good luck, hope you can get some help.
Fibro diagnosis needs to come with a mental health warning. 'Fibro is a Cr4ppy diagnosis that will mess you up!'. It means your doctor can and will write you off, fob you off which will hurt like hell.. Drs know they don't have the time to figure what is happening. They suspect we are making stuff up which is irksome for them. No-one likes to be fooled. There is a myth that fibros are lazy, wanting time of work etc. Further fibros tend to be Female, fat and over forty. All stereotypes that are unhelpful.
Females are less likely to be taken seriously by the Drs so their pain goes unaddressed causing mental and emotional distress on top of the physical. No-one wants to talk about this and the damage it causes!. Fibro traditionally takes forever to diagnose and so people tend to be older before they have the label fibro. I can see that started fibro symptoms when I was 5-6yrs maybe?
Fibro causes intense pain and exhaustion too which tends to discourage the sufferer to enjoy their regular activities which until Fibro, kept them fit. Many fibros before they poorly, couldn't were actually super fitties! Putting on weight due to disability is upsetting. Being blamed that the weight is causing the fibro is plain cruel.
We are still waiting for research to guide us but sadly, no-one seems keen to fund such research. I'm always amazed when the next new exciting fibro research, is yet another team who set out to prove it is a 'real' condition, rather than how to treat something millions of people are struggling to live with!! It's all a bit sad.
I'm starting to realise just how complicated this condition is. For most of us it has various drivers that keep it going. Physical, mental, emotional, even spiritual. Over time they will all come into play complicating the situation further. What to treat?
I see now how trauma that is not dealt with, can and does get trapped in the body. I can see how easy too. Fear around an injury may go unrecognised as a person is treated for the physical. Lots of us try to soldier on because we can't let others down. We don't want to see how this duty is also fear and trauma that is going to get stuck because we can't spend the time acknowledging it.
How many of us had to keep going for family, for the job, for pride, for everything, that allowed us to ignore our own needs?
And that bit is the simple stuff. We are multi layered and soon pain/ trauma etc gets layered on top of more pain etc...
There are so many reasons for fibro. Abuse and trauma are big ones but there are many many more. I realise that I started getting sick due to developing a fear to sleep. I was prone to terrifying nightmares. To cope, I became an insomniac and that is the short version of how Fibro entered my life.
If you would have asked me why I couldn't sleep, I would have been baffled. I just couldn't. Indeed, I wanted to sleep. I hated being alone and awake while others slept happily. It was exhausting. Imagine if some bright psychologist had asked the right questions to unlock that secret? And they had helped me deal with the dream that I had never been able to talk about?
It's such a silly thing isn't it? To be scared of your silly baby nightmares, esp when you are grown and still suffering? Imagine something so daft ruining a persons life?
After decades of poor sleep and life in general, just fixing my sleep has not proven to be the complete charm. It's done a whole heap of damage that needs sorting too.
I would like to think telling bits of my story might help others to avoid a lifetime of pain.
Drs like to tell how fibro is all in the head, but it isn't. It is absolutely in the body. Trapped emotions (often sitting with injury) that can't get released until we deal with them. All the time these emotions sit niggling us, they can do damage. Making the fibro harder to let go of and so dealing with our 'Poop' straightaway is the way to go.
If we have upsets, we need to recognise, and deal with them, and then let them go. You are allowed to have your feelings. You are allowed to feel how you feel and take your time to understand why? You are allowed to be fearful, but you cannot safely live in fear. Fear will happily take over your life in the worst way.
We have to accept the things we are afraid of and let them go. When people say that they can't, I say you only can't do something, until you can and us all learning to let go is really important. If holding onto fear ends up ruining our lives because of the pain it causes too, that's an incentive to learn to quickly deal and let go.
I don't know if any of this helps? Or if I just needed a ramble? No worries if my thoughts are not for you. We are all on our own healing journeys and have to find our own ways to do this. We all all different. Hope you have a great weekend.
What an amazing insightful post you did ur ramble as u put it hit me hard I suffer from exteme ptsd from the age of 12 onwards and recently its massively flared up I've been awake 58 hours straight and wen I do sleep it's only an hour or 2 at a time lack of sleep causes the body and mind extra stress and flsres up any condition be it mental health or physical health i coukd be sleeping now my family have all gone to sleep I'm so overtired I just am not even tired no more and can't relax my brain or pain enough to even try not gonna bother laying til I'm falling over if i lay wen im nkt tired by time i am I hurt too much to lay and sleep took me months to relaise this plus its summer now big flare ups for us as change in weather. Dont. No wat made me randomly read ur post I was actually checking my emails as I am waiting to hear back from doctors and nothing still but ended up here. Anyway just wanted to say to u all
Hold on in there through the pain and stress we try hide from our close ones and on ur worst days mood wise think of wat u have to live for even if its 1 simple thing for me it's my cat but everyone's got something or someone to keep them mentally fighting through on our worst days wen all we want to do is give up wen the pain is so intense and wen u havebt slept for days wen u cant rhink straight to remember the right words to make a simple sentence go together and doctors r no help wen u miss th. Simple things u used to do and pay no mind to it like oh i left my such and such downstsirs so u go down and get it but now no ur not strong enough to make the stairs up and down and don't like to ask for help for feelings ur a burden
hold on to ur one special thing even if its 1 simple thing u want to do in the future wen u can finally get some sort of help pain relief wise from a doctor or get the right referral just write that day off and try again tomoro as things can change it could b another bad day or it could b a better day I agree so much fibro shoukd definitely come with a mental health warning and especially those who already have mental health conditions is made worse by this no one tells u that in fact most of us do doctors jobs for them all the research wat blood tests and or scans or reffersls we need and even still u get no where such a slow process and left untreated affects not only ur mental health but csn cause other physical conditions that co inside with fibro with blood tests and scans coming back clear must be i. Our heads right but like u sed if GPS new more and we was reffered to the right places get the right tests it shows up fibro also known as the invisible illness as u can look fine but be so good at masking it from others and u cant see all the physical pain we have only wen u struggle to walk on a bad day or something u can't hide that . I forget where i was going with this mayb i needed to ramble too
Much love and stay strong dont let this defeat u hold on in there and mayb one day someone will do the right research to help us cope, we can only hope and pray and soldier on best we can everyday as we all do , be kind to yourselves easy to say I no I'm hard on myself too I get frustrated I cant do simple things anymore take some me time to reflect wen u can do ur research to help try speed things along in doctors process write things down always as wen ur brain goes on those times and u forget its already written ull appreciate u done it and most of all do 1 simple things that's just for u everyday something u enjoy b it watch something read something listen to certain music have certain cheer up food have a rant on here or speak to a friend on the fone uve not been able to see for long coz of illness do aomething that's not a job that needs doing but something relaxing for the mind to relieve a little bit of stress the lower the stress the more it helps u more willing to fight the pain and push thro, but know ur bobody'limits dont push urself too hard and then b wiped out for days not b. Able to do much at all and feel worse I'm speaking from my own experiences dunno if I'm making much sence like i sed ive been awake fo. Days but hay if I've just wrote a load of ramdom rubbish just ignore it but if any of it makes any sence and helps just 1 person, reading other people's problems on here and also solutions or suggestions to try helps many of us, take every day as it comes every day is a new lesson u learn about wat helps ur body and wat makes it worse from ur own personal experience listen to ur body and rest wen u need t. If u have the option and just no ur not on ur own in the struggle theres lots of us out there and probably loads more who have yet to b diagnoses on the start of. The looooong nhs process which is at many time so dis heartining wen u get fobbed off or not helped or belived at appointment sorry this turned well long and I got all soppy on this long message
i just want to help other as its both physically and mentally exhausting and very draining each and every day for us to do even the simplest of jobs aroind the house i just wanted to send out positive vibes to u all and we can all but hope it can get easier to cope with
Hi there, just spotted your reply. The joys of not sleeping, so (not) fun!
So at least you are aware of your main fibro trigger/driver? That's good. You are on your way matey. Just that bit took me forever! I don't recommend CBT therapy at all. Most seem pretty clueless, just needed a certificate to make money sadly. But there is heaps on the interwebby that talks about shadow work? Or you might have the funds and a good therapist in your area that deals with PTSD and Shadow? Usually by the time we are seeking help in something like the right direction, we are potless! But no worries. The Interwebby is a wonderful tool and you are bright enough to navigate your own path.
Medicating our inability to sleep or the pains that come from this is pointless. Your pains and insomnia will just keep increasing because they are there to get your attention. You are not supposed to just blot them out. Who knew?
I'm gonna launch in with something that may or may not help you, but might help someone else? If you don't mind? The thing with PTSD is it keeps taking us back? Somewhere we resist going? And quite right too, we don't want to be forced back. However this is our body's/soul's way of telling us, you HAVE to deal with this!! I know, it's horrid. But until we open that box and look inside for what that awful experience was there to teach us, the lesson we need to learn goes unlearned and worse, we get to be forever prodded, increasingly harshly, to go back and deal.
I don't know what you went through but you did survive which means you are strong and 'just' looking, examining etc, will not kill you. (I had so many yes buts to this advice). Now, I'd suggest reading and learning and arming yourself with the tools you need, but you need to tell yourself, IT'S TIME TO DEAL; NOW.
If you are willing to be brave and look at what happened and find your lesson, you will find freedom there. Will you be free from pain? I don't know. Depends how long you have been poorly and the damage done in that time, but you will feel better.
While you are learning how to tackle your PTSD, you can learn to meditate and make it a practice. The relaxation achievable is supposed to be on a par with sleep and helps our bodies with healing our everyday stuff. No sleep, means each days damage just keeps building up. Don't forget sleeping is when we deal with the days mental and emotional issues too and make full sense of them. Meditation can help with all this if you are prepared to give it a chance.
What you can't keep doing is not sleeping and thinking you won't have to pay for the privilege. Not fair, is it? I wish you well.
Unfortunately the NHS before the pandemic was on its knees, but since, the changes have been challenging and demoralising for them and exasperating for patients. Weeks to be seen by GP or physio, either refused to see a Consultant or months to see one, let alone tests. Many are forced to seek help from the private sector, which is what this government wants us to do despite its protestations.
We are left to do our own research, which they don’t have the time to consider.
I think there is ongoing research but so little. However, given the similarities between long covid, fibromyalgia and chronic fatigue syndrome, I hope the research there will yield something positive for fibromyalgia patients.
There needs to be a more coordinated, national, holistic approach to treatment, that addresses all aspects both physical and mental. There is no logic to current medical thinking that compartmentalises our body, asks patients to only talk about “ one problem” in an appointment but no definition of what that means, and mental health as either detached from the physical or as a reason to doubt symptoms are “real”.
I’m not sure what CP is but glad you have a supportive girlfriend, it’s so important to have people around you who listen, empathise and frankly can make you laugh even on your darkest days.
Any activity needs to be balanced by a rest period. Pacing yourself can reduce flare ups or their severity , as can regular sleep and good nutrition. Any distraction, albeit temporary can give relief, likewise a good story, whether on tv,radio, audio or book.
I prefer the word movement to exercise, and no matter how small, regular movement is a necessity.
Hydrotherapy has its challenges but seeing other people with different conditions puts your own in context, and the support we give each other and the encouragement of the physios and a nice hot shower after is priceless.
Oh Health8472 boy I know exactly where you are coming from. I am so sorry that you are dealing with this. This is what one of my doctors told me when I walked in with my symptoms list and all the results all the tests, scans, X-rays, and other things. He said I need to consolidate my list to just a few things and that he couldn’t do anything except to refers me to Duke or Wake Forst where they have a team of doctors who could see if they can do anything. So I know the discouragement and frustration of what you are going through. My heart goes out to you. 🤗❤️
I hope you enjoyed your visit too your girlfriends, really rotten having Fibromyalgia, glad you have had some helpful replies from members here. Take one day at a time ,can always see another doctor if your not settled with the current one you have , sometimes a fresh face and different approach , I did eventually get a really good doctor who was very good with this condition we have been landed with , some docs just look at you and don’t really say much ☹️it’s good too have a chat here ,always helps too share our feeling s and get helpful advice from others. Take care .
I know exactly how you feel, I have just written out a list for my visit to see my GP tomorrow. Now I am thinking about the point and whether to trip it up and speak from the heart about what is wrong with me. He probably will not listen anyway!
Amazing words from all of you, i had a decent rest, a slow look around Marble hill gardens and house. Nearly asked my missus's carer to cook pasta but i persevered and was all enjoyed.Very tempting to look at other practices, the other one I know of is "financially driven" so I will investigate that rumour.
CP - Cerebral Pulsey, she has much difficulty with movement.
I will keep /sighing and searching for any professional (Lol) work going on 💪💪
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Still no help with GP after going to the hospital!! :-(
Explaining on-going pain issues with GP
GP doesn't believe in Fibromyalgia!
MY GP IS SO WONDERFUL :)
GP says but Ruby Wax's book
