So for multiple years now probably since the age of 13 I've suffered from "flare-ups" and "fibro fog" and despite multiple trips to the docs etc MRI scans, blood tests, etc. Nothing has ever come up, my mother suffers from fibromyalgia but the doctors just seem to pass it off as me being lazy or trying to get time off work. I've called ambulances out on multiple occasions due to having the inability to even lift myself out of bed never mind even think about scaling the stairs. It's becoming quite a burden on my ability to maintain my rent payments as I always have to have time off work and I'm constantly being let go due to this. What steps can I take to get doctors more concerned about my welfare, even some help with pain relief or something. I'm at my wits end of feeling like half a person.
Feeling confused : So for multiple... - Fibromyalgia Acti...
Feeling confused
Hi
I'm so sorry you are struggling. I'm sure your Dr can refer you to pain management. They have a duty of card towards you and your Mum. Could you take your Mum with you on your next appointment? You are definitely NOT LAZY!! Please let me know how you get on. Take care of yourself Lynne
I could but my mum works a lot even with but she's on medication and stuff they've diagnosed her with it, it just seems in my case it's been swept under the carpet, one of my main problems is that when I arrange doctors appointments when my flares are at their peak I can't even get myself to the surgery, or when I get an appointment at a later date the symptoms seem to have faded which doesn't help the case either.
Thanks for the support though I'll take a look into pain management as I've got an upcoming appointment on Monday, hope you're faring well
Thank you.
I'm not too good at the moment.
Have you got a close friend who would go with you? It's just a thought, that's all. Are there any other family members with it? Please take care of yourself Lynne
Even if your symptoms have faded, you could still go to the Drs because you might feel more able to go to the Drs then
I've heard it could be due to the weather, me personally am not that up to date with all my information about it so hoping to find out a lot through this group, not diagnosed as of yet but all the tell tale signs are there plus the hereditary factor too, my cousin and brother I believe have shown symptoms and my brothers been for an MRI, aswell, same thing , no results came back. You too, Connor
Yes, many of us are weather affected.
Warm, dry weather, great, but as soon as dampness gets into the air or rain, we find the aches and pains raising their heads.
Can i suggest that when you go to your GP, you present him or her with a list of symptoms, say it is difficult when the weather turns cold and damp; and please ask for a second opinion if he tries to brush you off again.
Connor, It seems obvious that there is a general dismissive atitude with GP's to this disease and it is so frustrating.
I was diagnosed about 17 years ago and honestly the atitude of the Dr's seems to remain dismissive irrespective.
It is all to common a story that people come out of the GP feeling frustrated and degraded, downtrodden and often in tears,, it is uncalled for.
The sooner a conclusive test is "accepted" for the condition the better,, to be honest I believe that accepting a test would open a hornets nest they do not want to face.
Anyway I won't ramble and rant even if I'm very good at it!
Just wanted to say welcome along!
Ray
Having to juggle multiple bills and rent etc working is a struggle at times and it creates problems I know wouldn't be there if this massive weight on my back, my partner compared my walking to that of a toddlers when I'm at my worst (Sometimes I've even got to crawl to the bathroom). Thanks for the warm welcone.
Hi Connor you are entitled to PIP if you need help with personal care so if your really unwell and someone needs to help you into a bath and out when your so exhausted, needing prompting to eat as your so tired out and if you have anyone or your mum is looking after you or doing stuff for you your entitled to help. My neighbour gets it as her husband has to help her out of bed get her dressed and organised and she drives and works too. I didn’t realise you can get it even if you work so maybe your mum is entitled too. Also there’s stepchange they help give advice to anyone who is struggling and they will tell you what help is available to you. There’s also help with rent. If you go see someone at the council they can advice. I think it’s called discretionary housing payment. You could have both M.E (CFS) and fibromyalgia so seeing a neurologist and a rheumatologist will help you. They will ask you how long you have been like this if it’s over 6 months they then look at CFS as they now call it and fibromyalgia. It’s important that you print out on paper all the symptoms of CFS and fibromyalgia which is over 300 then you tick them all of and hand them to your dr. I think you need a diagnosis to claim pip but it’s worth looking up on it. There’s also carers allowance if your looking after your mum or she has to look after you. Go to the nearest citizens advice office to ask for advice as you can never get through on the phone line. There’s help out there it’s just knowing where to look. Get someone to go with you write everything down and keep a diary. Explain to the drs when your so ill your unable to get to the surgery and when the symptoms ease off you can just about drag your self in. Ask at pain clinic what help your entitled to and get all your medical notes by putting in a access to medical records request letter. Go online print one off and if asked just say it will help when you see a specialist as you can just hand it to them. You can then show that to any dr or specialist in the future. I wish you and your mum the best of luck. 😀
If you cannot get to see your gp at your worst times, keeping a diary of your symptoms and how they affect you can help to explain to the gp how bad things can be.
I've never thought about keeping a diary to be honest, quite a good idea. Will definitely be putting this into practice for future. Thanks.
Yes diary and pester the gp every 2 weeks or week keep going and telling them you pains, fibro fog, weakness. Also DONT ASK tell your " doc i need you to prescribe me..." and refer me to pain managememt asap. Explain to him the mental affect its having you. If hes a total waste consider moving gp. Fibro ia diagnosed based on symptomatic dont think any test can show anything.
But you will get what you need in time dont take no for an answer
Also fibro is the worst its the most annoying problem.
Conor, if your anything like myself you will probably have things in mind to disguss with the Dr. Once you get into that chair and they look at you and it all goes out the window or comes out back to front, upside down and just a general jumble.
It may be helpful to make a few organised notes and take them with you.
You wouldn't be wrong, it's like verbal diarrhoea, I can never get out how I feel without sounding like I'm either exaggerating my pain or it's in my head. I'm gonna try writing down the notes, or even better, use this to keep a log of my worst times.
Connor, I fully understand that feeling,, the Verbal Diarrhoea ,, it only takes a little bit of stress everything goes out the window and nomatter how you try to hold it together it don't work.
I'm so bad now that I will not go near the Dr without my advocate!
I feel this is a situation that has been caused by the attitude of GP's.
Certaintly in the last number of years I can see that there has been a great deterioration in my own abilitiy to comunicate easily with people,, it is all in there but trying to get it out is another thing, and it's so easy to come across as stupid,, you just feel stupid.
How things have changed from when I was at school,, the teachers used to be amazed at my abilitiys to hold a converstaion with someone while at the same time listen to what they were teaching and be able to repeat it word for word.. I could even make notes hold a conversation and listen at the same time.
Now my ability to listen and comprehend is greatly diminished,, I used to read like there was no tomorrow,, now it's pointless even trying,, the first word is gone before I get to the end of the scentence,,,, and the meaning is lost,, I can sometimes read that same scentence over and over again perhaps 10 time and end up having to put the book down,,, it's not a reading time.
When I write something I have to read and re-read,,, go back and edit,, I can do this many times and still when I post it I see glaring things that need to be changed or clarified.
The phenomina seems common,, you will notice it eventualy in many posts on the fibro site,, and recognise it in yourself,,,, there was a joke at one time about be fluent in reading fibro.
It's strange how hard that hits home. I hope soon something is done as I can't go on like this
I am so sorry both you and your mum have fibromyalgia. I understand how hard this can be as both me and my 19 year old teenage son who works has it. My son is exhausted 24/7 so I understand how challenging it is. Do you or your mum have any help. Your both entitled to PIP and a carer if you need care and fibromyalgia is a recognised disability. You are not lazy you are unwell. You need to take better care of yourself. Give up sugar and eat well, no stress and I can image that is not easy. Do you have someone who takes you to work and brings you home as travel plus work is exhausting. You must be so poorly if you have to call out an ambulance and i went through this a few years ago and my son within the last few months. Was ok one minute and the next I took I’ll and off I went to A and E. The same happened to my son at work. This happened several times and they couldn’t find anything wrong with me or my son. It’s probably that they are not doing enough tests on you. Have you developed other illnesses since your diagnosis of fibromyalgia as I now have several more on top. Do you have M.E (CFS). Please keep a food and symptoms diary as this will help you figure out what’s triggering the symptoms. Mine is certain foods, stress and medications. What medications are you on and could you be suffering from side effects. You may also be deficient in certain minerals and vitamins as we don’t absorb the nutrients from foods like most people. I recommend vitamin D, vitamin B100 from Holland and Barrett and an iron supplement to see if that helps you. Are you getting enough sleep or are you kept awake by stress and pain. If your not well enough to work at some point you may have to take time out. Get a print out of all the symptoms of fibromyalgia I think there are over 300 then you tick them off. Go get a print out of M.E (CFS) and tick off all the symptoms take these to your drs and ask could there be other conditions causing your symptoms that are not fibromyalgia. Could you get a Referal to a physio therapist and a rheumatologist to look at what’s happening and maybe they can give you something to make you well. They should do up to date blood tests too. I hope you feel much better soon. Ignore the negative remarks from other people as they have no idea the hell your going through on a daily basis. I hope you and your mum get better soon 😀
The problem is I've not been diagnosed, I've never had medication, I've had these symptoms for years but it gets swept under the carpet i.e labeled "lazybonitis" or that I'm just trying to get out of work etc. If only the doctors could see just how I am at home I've often thought about recording how I move, how I stand, how I carry myself but what's the use if my GPS don't seem interested. I've been told to get the vitamins before but can't afford then cos of the limited hours I work I'm constantly playing catch up with rent and paying for prescriptions is all unforseen collateral. All being well, say I do make it to the doctors by then the symptoms are near enough gone and I feel like I'm wasting their time. I'm only 21, I aren't a man who frequents the doctors very often so always just write it off as me being run down etc. Only just thought to look into forums on the topic on a whim and I've stumbled across this safe haven.
It’s not right that your being ignored by the drs. My son started having symptoms at 13 and as I have M.E as well as fibromyalgia I asked could it be that and I was fobbed off. It’s taken 6 years of ill health and me paying privately for my son to see a rheumatologist and other specialists and going back to the drs 24/7 that I finally got somewhere. Keep a symptom diary and go back to your drs ask them to refer you to a rheumatologist get your mum or a friend to go with you and explain the severity of your symptoms explain your struggling to stay awake at work and your constantly unwell. If you get nowhere change drs and start again. I am just so sorry that your having to suffer all because the drs don’t believe you or will not take you seriously. Ask them to do blood tests that they will do and hoping you get answers. It’s a shame your only 21 you have your whole life ahead of you and you should be happy and well, it just isn’t right that your treated in such a way. The only thinks I can suggest is go with a symptoms diary and find all the fibromyalgia symptoms and also M.E (CFS) online then print them all out hand them in. Just say a friend of your mums is a retired nurse and she has said it needs investigation it’s what I said and then they sorted it out. If your drs are no good you must change the surgery and find a dr to help you. Also go online print out a letter to access your medical records. Sign it and hand it into the drs once you have them read through it all to see if there is anything on the notes that suggests what’s wrong. Let us know how you get on.
Hi connordunn
From what I’ve read of your message out to the community here it’s quite striking to me that you may well also suffer with the sister condition to fibro called chronic fatigue syndrome. Another name for it is Myalgic Encephalomylitis (M.E). It’s definitely worth reading up on this especially try to find ‘fatigued to fantastic by Dr Jacob Teitelbaum (an American Fibro/CFS expert). I think you might find it an eye opener and helpful.
Anyway, just thought I’d let you know. Good luck
BMW40
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