My doc told me I'm suffering with fibromyalgia and said it's nothing more than an annoyance like a common cold!! I can't walk very far as hips and back are unbearable let alone the 4 flights of stairs that I have to climb to get to our flat (we haven't got a lift).
He said I need so excersise and said walking is good I said it was too painfull to walk so he said use a bike!!
I'm a single parent with 3 kids and I'm not sure how much more I can take. My kids have become my carer's (helping me get dressed, putting shoes on and taking them off, carrying things for me down to making me a cup of tea as kettle is too heavy even with just enough water for one cup.
I have to sign on tomorrow and just can't face the pain. The last 3 weeks I've slept for about 20hrs a day as was just exhausted and couldn't keep my eyes open. Not sure I would have held down a job if I'd been working.
Any advice or help would be greatfully recieved. Thank you. xxx
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disstressedAng
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Hello, and welcome to the forum. I am so sorry to hear you have had such an unhelpful comment from your doc. On this site you will find lots of great information and advice, as well as support, a listening ear, and a bit of fun to help the day along, and a friendly bunch of people who have all got fibro.
Four flights of stairs with no lift sounds really tough. The good news is that now you have a diagnosis you can start to find out more about how to manage the illness, and improve your quality of life.
Many of the members here (including me) do manage to work, some full time, some part-time. Others don't. We are all different, but we all know how you feel. I have had my times of sleeping like you. I have had days when I've had to crawl on hands and knees to manage a single flight of stairs, I have no idea how I would have coped with four!
A helpful and understanding GP is very important. Maybe there is another doctor at the practice who you could talk to? You should be talking about medication options, - the pros and cons, maybe a referral to a specialist (often a rheumatologist, sometimes a neurologist), or to a pain management clinic. You certainly shouldn't just be left to deal with it, as if it will go away in a day or two!
Do feel free to ask any questions, express your concerns, join in the chat. Also look at the main fibroaction website (link at top of the page) for more information on symptoms, treatments etc.
Thank you so much for the advice. I have managed to get forms to register with a new doctors as I had tried all of them at my surgery and all except the locum said it's a self management condition so read up on it!! The one who was helpfull and caring was a locum and couldn't refer me for further help at the hopsiptal, that's why I went back yesterday to get him to refer me.
Having a bit of a hard day today as had to sign on which was almost impossible. My eldest who is 13 was home today as she has that nasty cold at the moment so she helped me get dressed and collected her younger sister's from school because I was exhausted when I got back.
No 1. I suggest you see a different, more sympathetic doctor. There are great ones out there. You need a review of medication and a referral to pain clinic.
No 2. Seek an occupational therapy assessment for aids around the home to help make life a bit easier. They could write a letter of support to housing for a move.
No 3. Ask for a social work assessment for you. They can provide help in the home, with your personal care, so kids not doing it and if eligible help with laundry, essential cleaning and shopping if needed. Also argue that as you have children you need to have assistance making freshly prepared meals. Worked for me and I also have a direct payment for social activities for my daughter.
No 4. Get in touch with housing for a possible move to more suitable accommodation.
No 5. If your children are at school ask for a CAF assessment. They are brilliant and turned my daughters world around. Childrens social worker's don't need to be involved unless necessary. She has support at school, counselling if needed. She has 2 to 3 designated teachers/staff that she can talk to. They put in measures to call me if she was worried when in a flare and the transition to senior school was amazing. The other best thing they did was to refer her to young carers. They meet once a fortnight, transport can be arranged. They are with peers who are carers and they also go on outings. My daughter has been to legoland, Drayton manor plus other smaller ones. They stay with young carers til 18. CAF can also assist with recommendation for suitable accommodation.
No 6. Get intouch with citizens advice to claim for DLA and housing, they can also help with other benefits or services you may be entitled to. You need form filled in with your worst day, same with social work assessment. Don't attempt DLA form alone. It's about 50 pages and lots of us who have done it alone are still fighting for it.
No 7. Contact this forum anytime and someone will help.
Good luck and use this as a tick list when you can face it but one really then goes to the other easily and you can do it in any order.
Thank you so much for all the great advice. I have got forms for a new doctor (see previous reply).
I have an interview with CAB next week to descuss help and benefits, so will prob be back on here asking for more advice.
My kids have been attending young carers for a few months now but I assume you live in an area where they are able to plan activities for the kids and have transport which arrives. I have found the whole thing very stressful, maybe it's the way our group is run. I'm not in a position at the moment where I can help them sort themselves out.
I'll be in touch shortly I expect when I get to the next hurdle.
No problem whatsoever. Can get sporadic transport when I am in a flare but if not I can drive there as its not too far.
If you would rather message me at next hurdle, please do so. As well as having fibro, I am an adults social worker for physical disabilities, so know the systems with social work assessments and a lot of occupational therapy stuff. I could help you get the most out of the experience.
I am so glad you have an appointment with citizens advice. Remember if you are filling in DLA form, take it on your worst day.
Take care
Jo
What fantastic advice given .. All I can add is how would your GP like a cold for life... Please seek another GP at the practice or a new surgery the only things that keep me sane , well for me is my family my best friend and my GP who after a lot of searching I found a great one he also sent me to see a rheumatologist who contacted social services for me to get me aids round the house and other things I needed..
there are loads of meds for fibro including antidepressants which work on scrambling pain signals to the brain as well as helping with sleep if taken at night ... So please please don't suffer get all the help mentioned above and try to find a better GP
Thank you, I've started making calls today to get some changes started.
Any advice on how to cope with pain in the neck, shoulders and upper arms would be really welcome today as I can bearly move. Have a heat pad on my lower back everyday and couldn't live without them.
I have a hot pack .....painkillers... Still trying to find some that agree with me , but for neck and shoulder spasms that I have constantly I have trigger point injections every three months at my local pain clinic..my GP referred me and they are wonderful
You are lucky, I was only allowed three lots of trigger point injections, although I have myofasical pain. I was offered more accupuncture at a cost by our local hospital but would rather pay for the injections.
Have you got a hot water bottle that you could use for your neck or swap it around with heat pad.
Hopefully soon change of gp will enable you to sort out your meds. I Am lucky that I have my usual meds, then meds in a lot of pain and then oramorph if am in a bad flare.
Are you able to access your bath as that may relax you and help relieve the stress.
With the stress over the last couple of days, it would have made your pain worse. Hopefully now you have the support of this site, that should ease a bit.
I do neck exercises too and I know that some people on the site use relaxation apps to help them to rest and I lie on the side with the worst pain.
You could be really evil and wonder if your doctor might one day get fibro - but you wouldn't wish it on anyone!
i suppose he was looking at the fact that it's unlikely to kill you, but you could say that of so many chronic, painful diseases. I'm sure you will manage to find a better more understanding GP and that you will find some decent treatment to help you get on with your life. You can rely on support from everyone here!
Thank you and yes I am evil and wish this on him and my cluster headaches which I have also suffered with for over 10 years, his response was it's just a headache suck it up (shortened version).
Should be sorted with new doctors next week, so fingers crossed.
This doctot is a disgrace and need to be reported, It would serve him right to get a taste of his own medicine and is then told oh its just an annoyance like a cold, but anyone who suffers from this wouldn't be as cruel as to wish it upon another. Seek another doctor who has some idea of the crippling effects of this.
I wondered if I could report him but didn't know how to do it.
Forms filled out for new doctors so fingers crossed I get more help there.
Thank you, Ang. xxx
So sorry to hear this diagnosis for you, and if it was nothing more than a common cold then we must all be wimps (not). Unfortunately for you your doctor sounds as pleasant and ans useful as mine.... And thats about as useful as a chocolate fireguard !!!
Well first thing to do is to research as much as you can and educate yourself to help you to understand whats happening and y. Thers plenty of info on the net, you have the world at your finger tips.. Pain meds would be the first thing to get you able to cope as much as poss. If you can ease the pain a little its a start. Then get support from family and friends, i'm glad your kids are helping..
Youve come to the right place to get support and answers to your questions. We dont know everything but people like myself who have been diagnosed and gone down most avenues can give you some support and answers, Firstly go back to docs, a different more understanding doc, preferably a better educated doc. The younger they are the better informed they are likely to be. Fibro used to be what they called YUPPY FLU". Younger docs tend to be better informed and more understanding.
Theres plenty of people on here who will be happy to give you well informed, NON judgemental advise...
Theres no cure but you can get to a point of managing it, it takes time to find what works best for you. Everyone is different...
Thanks for the advice, your all really helpful. Joining a new doctors next week and got an interview with CAB for benefits and anything else I can do/attend to help.
Really want to try pain clinic but as the half wit I saw yesterday wouldn't refer me to the 3 departments I asked, I've got no hope on a pain clinic referal.
Fingers crossed these new doctors will be a bit more helpful.
Will be asking lots of questions as fed up being treated like I have nothing wrong with me.
Anytime hunny, we can all give you advise and support. Write yur questions down because sometimes the fibro fog can make u forget certain things... Some days i just cry because it frustrates me so much not being able to do what i used to do, then the stress of that makes your fibro worse. It fluctuates, some days are better than others... Thre has been a few comments on pain clinic that i'm watching closely as i'm waiting to go.
Ive Only just been refered and ive had it since 2007 !!! I still havent accepted my diagnosis yet and get upset quite a lot, Thats my downfall. Ive gone from being a Recruitment Consultant for the NHS to not working at all. Thats hard to accept
I think once we can manage fibro life should get better. Id be happy with just having my hands working lol. I just try to think of people who r worse off, then i appreciate that my fibro can be managed better. It just takes time i suppose xx
Nothing useful to add but please forward the name and address of your doctor - I'd like to shake him warmly by the throat! There's loads of useful info on this site. It might be worth printing off the sheet about fibro symptoms and their impact to have in reserve in case you come across another such caring GP. Hope the new doctor can give you the help and support you need x
Sure sounds like he does not believe in fibromyalgia and his compassion is niltch. Can you ring up the surgery and ask to see another doctor ? The receptionists do not usually ask the reason why.
Hi circuitrunner, my doctors receptionists DO always ask why you want to see the doctor and usually i'm quite ok about it. then one day i feeling quite dreadful and when asked I responded with such a rant that i was told to come in immediately! not sure i'd recommend this course of action though!
How on earth can a receptionist ask you your diagnosis of how you feel etc - cheeky monkey - that is why you are going to the Doctors for HIM to see you for help. Thankfully, it has not happened to m
You need to download as much as you can about fibro. Your doctor is an idiot. Give him the pages that describe fibro and any medical articles that support you and shove them in his face.
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