This is a bit of a rant, and a question combined, so please accept my apologies in advance. I feel really down in the dumps and I would love to hear from others, we share this battle together and some of the people that I have connected on here really give me strength x
Do many of the fibro warriors feel neglected by the NHS? Since Covid, I feel like support has gone down hill, especially for fibro. I was diagnosed in 2013, and I have experienced a huge change in medical assistance since the pandemic, does anyone else feel the same?
Just getting a face to face appointment with the GP is like winning the lottery (I am in Bath/North Somerset) and then when you get the appointment, its a plam off, normally. I am prescribed morphine, no physiotherapy, no hydrotherapy, nothing. I hate taking really strong meds, it makes things tempting.
I feel like the GP's and medical professionals want me dead, to go away and take an overdose, and that they just want the problem (me) to go away. I would really like CBD oil but you can only get that privately. I pay about £100 on CBD oil which I source privately but I am on benefits. I also pay for private treatment, fibro diagnosis stopped me from obtaining private health insurance so I never have any money because I am paying my way with very little support from the NHS. What is pending on the NHS feels like they are sending me around in circles, its a waste of my time and their time. Does anybody else feel the same?
Then of course PIP and the assessment process is putting people in a very difficult situation. I know someone claiming full rate PIP, he claims to have a mental issue, not sure what but he is running and walking miles and drives a new car on the mobility scheme, he doesn't have a blue badge which is odd because a blue badge is automated with high rate mobility? I know everyone is different and I shouldn't judge but my mum has stage 4 cancer. She was was honest when going through assessment, really honest and PIP turned her claim down, they said nothing is wrong with her?
Yes it's all to do with with how you fill in the form but the system is not fit for purpose if someone who can run have full rate motability and someone with severe cancer who is asleep all day, get turned down. Anyway rant over.
My biggest concern is, how do with survive in a system that is so corrupt? What keeps you all going? Its dog eat dog out there. Would love to hear some encouraging words of support, I feel deflated at the moment.
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know how you feel. Have been through too many highs and lows with this since 1991 when it all began for me. You have to be your assistant and fight and appeal when ever possible. The kick backs are hard but we just have to keep going.
your mum may choose to reapply once has evidence that can be a daily journal by her or carers. the cab has an online help webpages. macmillian has a phone line that may help.
cannot really discuss your known person there may be things going on do not know about. what your seeing is probably a front to hide behind, perhaps there way of coping
many hide their illness,
even fibro is a hidden illness. what cannot do compared to can is depressing. however it seems they need to know the restriction how often occurs
do you use anything to make your fibrolife easier?
yes you mention the appointments did you mention on form? anything else?
perhaps record your day amazon has a fibro journal then think about applying,
Hi there, exactly this! I'm having to pay for private hydrotherapy but feel I really shouldn't have to! The system is corrupt...I know someone who says they have MS...yet I've seen her move 6ft fence posts from my garden to hers, never uses a stick or wheelchair (unlike myself) and supposedly has a whole team of support in local hospitals yet I'm left to rot! So yes I totally get where you are coming from...I've just had my pip form come back through again and had cab help me but I'm getting the feeling this will be rejected and I'll have to go down the tribunal route. Again because of lack of evidence from doctors who don't see you or don't have time to listen to how your condition effects you which is the very evidence pip asks for...a doctor doesn't see you day to day or know how it makes you suffer or struggle, it's so stupid...as gor references from specialists- what specialists? I get refused hydrotherapy, pain management, neuropathic specialists, rheumatologist - I've had my diagnoses so now I'm supposed to deal with it on my own! Unless you take the pills (that don't work) the doctors won't help
There are stages of MS, from feeling totally fine right up to being unable to do anything and eventually death. It’s a degenerative disease that will likely kill the sufferer, unlike fibro, so I wouldn’t be too quick to envy your neighbour even if she can move fenceposts at the moment..
Hi I feel the same way, as to how some know how to use the system, whilst others who really need the help are just ignored. I pay privately for CBD treatment as the medication from the NHS is not working. I have had a 10 week Pain management session that was provided through the NHS, but that does not get rid of the pain and fatigue etc that is contributed by the Fibromyalgia and Arthritis. It did help me understand my pain and how to pace myself and accept it’s not going to be cured anytime soon. What keeps me going is my family and my large circle of friends. Also being a Jehovah Witnesses there are many articles and videos on the official website JW.ORG. The website is free of charge and is suitable for all ages both young and old. It is also available in many different languages. If you type in Fibromyalgia in the search box on the top right it comes up with 13 different subjects starting with one from 1998. And there is also an article from 1992 (A Mysterious Illness Receives Recognition). It is this that helps me not only understand what I am going through but also why things are the way they are. I am not trying to convert anyone, but just sharing what helps me to continue to living with a long term illness. These articles also help family and friends to understand the impact that Fibromyalgia has on our lives. I hope this helps x
You have no idea what I would do to be prescribed morphine. You can have my face to face GP appointments where he very gently listens and nods his head then does nothing useful - I’ve just been referred for CBT (again) as if that’s going to do any good for pain.
A terminal cancer patient (if that’s what you mean by stage 4?) has full PIP fast-tracked and paid weekly in advance (unlike the rest of us who get it four weekly in arrears), enhanced both parts, it should be automatic.
A blue badge depends on the council, it’s not necessarily automatic and even if he had one, he doesn’t necessarily need to display it all the time.
There’s always someone better off and someone worse off. Comparison is the thief of joy.
I have only just been diagnosed two years ago so have no comparison but basically I was diagnosed by a GP, given a leaflet to read and left to my own devices. No medication, no info, certainly no offer of referrals anywhere, I’ve had to do my own research and ask for everything.
The NHS is in pieces - my local mental health team is so stretched that their ‘emergency’ response time is five weeks for a call back from a nurse for an actively suicidal patient, then a further three months to speak to a psychiatrist. Currently we have zero permanent psychiatrists in my council area. So as nice as it would be to get experimental and expensive treatments like cannabis prescribed, there are more urgent needs. That’s what PIP is supposed to be paid for, so we can pay our own treatments. I found it quite easy to obtain with help from local CAB, they’re just very stuck on their descriptors and it has to be filled in a certain way.
Sorry if I sound unsupportive - it’s very difficult to listen to someone on the gold standard of pain relief complain that’s all they get when trying to get painkillers is like blood out of a stone and some of us are being told to take some ibuprofen and go for a walk.
Yes, would be nice if I could go for a walk too but I can’t either. Even social security scotland consider me unable to walk further than 50m and awarded accordingly - but my GP’s advice didn’t change. They wouldn’t even give me morphine in hospital when I nearly died of sepsis - I got one measly dihydrocodeine tablet and two paracetamol every four hours, while there was a nurse sitting watching me 24 hours a day and I was on oxygen.
I don’t think you realise how lucky you are to be getting what you get. Like I said, I’d swap you my face to face GP appts any day. I’ve known cancer patients who didn’t get anything stronger than co-codamol until it was confirmed they were terminal.
Addiction issues in hospital with meds being doled out under supervision?
I’m prescribed methylphenidate which is an amphetamine, so no, there’s no concern about addiction issues for medication. Your doctor is the unusual one, not mine - to get any kind of opioid for more than a couple of weeks, never mind morphine, these days is incredibly rare. They are trying to force even those on long term scripts off them, not start people on new ones. Even after major surgery (I had a c-section, my mother in law had a triple heart bypass) you will get between one dose and a day’s worth in hospital and then be discharged and told to buy some paracetamol.
Hello, yes a good rant too get your feelings out once in a while , I am glad you have had some helpful replies from people here, yes a lot things I hear and read seem very unfair, I have a combination of Cfs /Fibro and I rely on my husband pensions as I don’t qualify for any benefits as it seems I’m not bed bound can do most things for myself on good days (yes days I cannot do anything when both condition s kick in )no state pension till I’m nearly 67 I think . There a a lot I’d like too say in defense of many here ,watching the news I have too walk away 🤣going back too the NHS I read here a lot struggle too see the doctor let alone the same one like years ago, hospitals can be over stretched at the best of times, I did say too someone here the other day if plates were cheaper I’d like too smash a few sometimes 🤣but that would cost me ☹️, how I do I cope threw all this , good friends to talk it threw and put the world too rites as the saying goes , and people here , we get it and totally understand xx
starting morphine is scary but can be so helpful if used carefully. my body can get some relief that way. it helps me to take warm baths, read a book and do anything that gets me above the pain. i find nothing works all the time but finding the right combo of vitamins, herbs, and med. can help. i need to change it up though since nothing works forever. i hid so long that lost most friends. please try to not lose contact with people. it makes such a difference. i know it sounds dumb but i find remembering to breathe can help. our doctors tend to be too busy so we need to rely on our own research. i always think i'm alone but we aren't. i try to remember that.
Fibromyalgia is often referred to as an "invisible illness." Because fibromyalgia does not manifest visible symptoms in the same way that many other health conditions do, individuals may appear outwardly healthy to others. This can lead to misunderstandings and unfair judgments from those who may not fully grasp the complexities of the illness. It’s important to recognise that just because someone looks well on the outside does not mean they are free from pain or struggle on the inside.
Our symptoms can fluctuate in intensity and may not be immediately apparent to those around us. As a result, people may inadvertently make assumptions about our capabilities or the legitimacy of our experiences. This can be particularly challenging when seeking support or understanding from friends, family, or even healthcare providers. The lack of visible signs can lead to scepticism about the severity of our condition, making it essential for us to advocate for ourselves and educate others about the realities of living with fibromyalgia.
Moreover, the societal tendency to judge based on appearances can create internal conflicts for those of us suffering from fibromyalgia. We may find ourselves grappling with feelings of guilt or inadequacy, especially when we see others receiving health benefits or support for conditions that are more visibly apparent.
It’s crucial to remember that every individual’s experience is unique, and the challenges we face with fibromyalgia are valid, regardless of how they are perceived by others.
The above can equally apply to the other conditions or people mentioned in the OPs post. As mentioned comparison is the thief of joy. When we are looking in through other peoples "windows" to see what is going on in their life, I think it is more the frosted bathroom window and its important to remember that our view of others will always be distorted.
Hi so sorry you are feeling so down I know what you mean. My fibro started In 99. Spent a long time asking why I was in so much pain going round in circles I gave up until it went away. roll on to 2009 in such a state by then back again round in circles and eventually in 2012 I was diagnosed with Fibromyalgia then in 2019 I was diagnosed with ME/ CFS and PEM find that they don't want to know a lot of the time you can never go to the doctors for one thing because everything builds up between appointments and they then tell you they can only see you for one thing out of time and send you away to make another appointment which takes three weeks to get, repeatedly sends you to the pain clinic and there's nothing they can do they send you to the chronic fatigue clinic you don't need to go a second time. When my mom was dying a cancer she was asking for Care at home and they said why I said she's got cancer so what can't you do so well she can't do anything very much but if she can't be bothered we can't send care I was told it's only cancer, by the time we've got it sorted out she had died.. it is getting to be a very don't care world Take care gentle hugs 🤗
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