Fed up - this is not taken seriously and doctors reluctant to do anything

[jamie_86]

Apologies for the longer message.

Hey everyone. I am a 31 y/o male and have been having lots of neck pain, pain near hips, knees, elbows, wrists, ankles and my body is very stiff all the time. I can never sleep well, and even if I do manage to get some sleep I still feel exhausted and anxious all the time.

I have problems recalling memory sometimes and with concentration on tasks. People often talk to me and they feel I am not listening as I don't recall what they said as my mind can feel foggy.

My stools are always somewhat loose and I suffer from discomfort and nausea upon waking. Muscles seem painful, for instance if I poke my self in the chest area or any other muscle. It's painful and pain will last for about 10-20 seconds afterwards.

Eyes are always sensitive and so people make fun of me when i have sun glasses on when it's not sunny. I have also noticed my teeth hurt and I have lost my appetite and lost weight due to this. I have no energy to do anything and am exhausted all the time. walking up the stairs or simply drying my hair will cause me to be worn out.

I have tried physiotherapy and the chiropractor as the doctors suggested and also acupuncture. None of which have helped.

I had an mri scan which did not show any thing to be concerned with and the doctor suggested it may simply be tissue damage at the back of neck which is causing pain in back due to poor posture, and the rest of body along with and cervagiaenic headaches.

The neck exercises they have suggested are not helping whatsoever.

I have lost my job because these symptoms and no longer can drive. I am unable to work and am now very depressed and find my self crying several times a day in despair.

It seems no one really understands the condition and the physical and mental pain I am suffering and have lost friends because of this.

They just think I am lazy and want to lay in bed and be miserable.

I have always been hard working and sociable before this and had plans to start a business.

I used to be fit an active and run races so I am not lazy.

I was also told by my doctor that I should be careful with pushing for a diagnosis of fibromylagia as I'd get little support from the government and should be mindful of this, they seem reluctant to diagnose as this.

I feel a little trapped and not sure hat to do.

Does this sound like Fibromyalagia??

I now have no job, no money and barely surviving.

I really don't know what to do anymore but just needed to share how I was feeling in the hope that someone can offer some advice.

😢 thank you for taking time to read this. Jamie.

[Miss68]

Oh Jamie, I'm so so sorry that you're having such a tough time. Everyone has different symptoms when it comes to fibro and although I'm not an expert, it does sound like you're having symptoms of fibro. Those people closest to you tend to be the worst when it comes to understanding what you're going through. If I may offer some advice I would say speak to citizens advice to see what help you're entitled to benefits wise. Also, you can talk to me anytime you want to Hun. In fact, people on this site are the kindest, friendliest people you could ever encounter. Stay strong and take care x

[Mackembabe]

Well Jamie I think you have come to the right sight, it does sound very much that you have got fibro as all the symptoms you have, would suggest you have got it, sorry, but the people on this site are so kind and we share good times bad times and am sure the administrateers will be able to put you in touch with the right people, welcome to the elite club keep on smiling don't let it win and if your friends can't see that you are not putting it on then they are not true friends better off with out, meet the other men on this site they are getting quite a few.

Love & Hugs

Xx

[Greenpeace in reply to Mackembabe]

Hi jamie_86

after reading your post, once again it causes me anger about how some of the Medical Profession can be so ignorant, and arrogant, in their attitude to Fibro.

What angers me more, is how they can run some tests, give token Physio, and excercises to do, and when your pain is still there, adopt the attitude that your pain must all be in your head...gr gr gr.

From what you say, your symptoms could very well be Fibro, and from the way they have changed your life so drastically, you need to get sorted out with a proper treatment plan, and a diagnosis.

First priority CHANGE YOUR DR. There are some good Drs around. If for any reason you can’t do that, every time you go to see him/her, bring someone with you, it’s amazing how Drs change their attitude when there are witnesses to hear what they say.

Ask closed questions, like, so we’ve tried this, and this, and it hasn’t made any difference, the pain is still the same, where do we go from here? Say things like “ there surely must be something that we can do for the pain, my life has been changed so much by these symptoms. Note I say WE, because Drs like to work in partnership with their patients to manage their symptoms.

Don’t be put off by what he says about you don’t want to have a diagnoses of Fibromyalgia. There are many people who get PIP, and other work related benefits with Fibro. In order to get PIP it’s not your diagnoses of Fibro, but how it affects and limits your life that gets a successful claim. Until you get a diagnoses as to what is causing your symptoms, you won’t be able to successfully make a claim for PIP.

There are other work related benefits you might be able to claim. We have a Benefits Advisor (Janet) who gives good advice. I can’t remember her link, but one of our Admin people will be along to welcome you, and they can give you her link.

In the meantime, don’t despair, you have taken the first step to getting help by coming on to this forum, you will be given good advice and support.

Take care.

GP 😊😊

[Ramjets]

My heart went out to you reading your post Jamie. Your story was so familiar to me with regards to my own experience. As Miss68 says, we are not medical experts but the pain and sensitivity you are suffering do sound a lot like fibro symptoms. I suffered for years before my diagnosis and it affected me just as bad mentally as I believed I was going mad because all tests etc were coming back negative. When I was eventually diagnosed, it was bittersweet as who wants to be told they have a chronic illness? But at least I finally had a name to put to all these different symptoms and knew I wasn't imagining it all. Also, I believe you need to know what you are dealing with so you can begin to understand it and learn how to manage it. I appreciate your doctor's hesitancy about pushing for a diagnosis because of the lack of support, but are you getting much support now? The first step in dealing with this condition is to get a diagnosis so you need to ask your doctor for a referral to a Rheumatoligist. Also have you applied for any benefits? Again I am no expert but I do know that having fibromyalgia in itself is not sufficient to be automatically awarded benefits, it is down to how it affects you, which from your post seems pretty significant. So as Miss68 suggest if you have not done so already, then it may be an idea to contact the Welfare Officer at your local CAB. If you feel you could get back to work in some capacity then there is an organisation called Remploy who help people with restrictions find employment, so you may want to check their website out too.

In the meantime, you have come the right place to get lots of help and support and to have a good cry and moan if need be.There are so many friendly people here willing to listen and offer any advice they can. So welcome to the forum lovely, take care and good luck.xxx

(P.S. Just a little tip, you are likely to get more replies if you lock your post as a lot of members aren't keen on responding to unlocked ones. If you click on Edit (drop down box next to like box) and then at the bottom of your post you will see "Only followers in my community" so click on this and your post will be locked. ).

[jamie_86]

Thank you so much for all the help and support. It means alot.

I will speak with CAB and also take someone with me when I next visit the GP. It is often difficult to see the same GP as they have limited appointments and even though they have my notes it feels I have to re-explain my self each time and go around in circles.

I have applied for esa and also some help with rent but the amount they have awarded does not provide nearly enough income to pay rent and survive, I am having to borrow from relatives in order to keep a roof over my head.

Thanks again for taking the time to help, I really do appreciate it.

I think the uncertainty and not having it diagnosed correctly is preventing me from moving forwards and managing things.

I have tried to lock this post but it mentioned that it has been flagged as inappropriate so not sure why that is.

[DanielleGemma]

Hey Jamie,

I am so sorry that you are having such a tough time, and welcome to our wonderful forum ♥️♥️

May I suggest a sneaky look at our main website which has loads of useful information and tips! fmauk.org/

I take it from your post that you have not had an official diagnosis and that the investigation into this has been stopped?

♥️♥️

[jamie_86 in reply to DanielleGemma]

Thanks for the link really helpful. I am continuing to push them but currently they have given me some basic exercises for muscular pain (which have not helped) and ignored my other symptoms. I am due to go back this week for a review. If just seems they assume I'm a hypochondriac when I describe all my symptoms as they dont see my day to day struggle.

[DanielleGemma in reply to jamie_86]

I completely agree, I had this problem with my doctor previously! I'm not sure if it will help but I wrote a pain diary for a week before I went and literally listed all the pains and aches I was having down and then took it to the doctor so they could really see what it was like! ♥️♥️

[Bobby16]

Your doctor is a bafoon. You'll get lots of support on this sight.

[DavidCumbria]

This could almost be my story word for word. All of the above have left me isolated and feeling completely hopeless and worthless and extremely lonely. People don't understand how I now struggle to leave the house and sometimes even bed to get to the toilet.,they think I need to try harder to do things and that I'm not helping myself, it's that old "give yourself a shake" attitude and it's desperately frustrating. I find myself in tears everyday and feeling suicidal at times because I don't know what else I can do to get out of the situation I'm in.

[spider555]

I've been told to get a grip 😩

Don't let the buzzards get you down x

[jamie_86]

Thanks for all your support here.

I finally had my appointment with the rheumatologist today after months of blood tests and trying other things.

They diagnosed me with Fibromyalgia and gave me some advice on managing the condition- through exercise, more pain relief, and CBT.

I am severely depressed and have no job, no money and my partner decided she no longer could be with me due to all of this happening. I feel it has ruined my life in every way possible.

The council is now reducing my financial support which means I will be unable to afford rent come to Janurary.

I have requested a discretionary payment but unlikely will get this.

I guess my question is whether anyone has any advice on the financial aspects of this, what can I claim to support me until I am able to work again?

The consultant mentioned it may be 9-12 months before I feel I will be able to manage everything and work again.

Thank you and all the best, Jamie.

[robpw]

I know how you feel took me 7-8 years for a diagnosis and now I’m back in the uk the doctor was like well we have different criteria and is making me go through tests again etc feel like I’m back at square one

[jamie_86 in reply to robpw]

Sorry to hear this. Hopefully, you get the support you need soon.

[Stevejj]

Reading your post it seems like you have been through an awful time for which you have my deepest sympathy. I had the same struggle with you for the first year with my doctor, thought I was some hypochondriac that was anxious. It wasn’t until one day I lost it with him and said I haven’t been in a doctors surgery for 12 years why would I want to leave a well paid job (engineering) to claim ESA. This seemed to hit a nerve because ever since then he has listened. I was diagnosed via my rheumatologist who has suggested CBT and physio. It’s a slow progress but feel this year I am slowly getting a bit better and can manage things better. What are you claiming for? I can only claim Contribution ESA as my wife works. Hope you get the help and support you need.

Steve

[jamie_86 in reply to Stevejj]

Hi, appreciate you taking the time to reply. Happy to hear you eventually got the DR to take things seriously and are making some progress in managing things.

I am claiming ESA and housing benefit, I am more or less left with nothing at the end of the month and my mother is having to help me out with survival but she cannot afford to help with rent or do this forever.

The problem is that the council offered the first 13weeks protection for my rent but now are reducing the amount in January which wont cover near enough. I am not sure when the ESA would stop.

I rent a bedroom in a house share and apparently, I need to downsize and look for something cheaper?

I am asking for a discretionary benefit payment to help, and my doctor was kind enough to write a letter to the council recommending do not change residence but unlikely to get accepted based on their initial response about their limited funds.

I only got my diagnosis today, and I am not sure what else I can claim for but come January I am not sure what I am going to do. I feel very overwhelmed and wish this was not happening to me.

[Stevejj in reply to jamie_86]

Jamie that sounds awful can’t really downsize to a smaller residence than a room. Can you claim PIP replaced the old disability living allowance. Your local CAB maybe able to help other the other helpful people on here who have claimed as I have not and don’t know much about the process. Sorry to here your life has crumbled I felt exactly the same and fell into a depression at the beginning. Slowly but surely with help I am clawing my way back. CBT helped me big time (its not for everyone) and taught me a different way of thinking at situations. It also calmed me down as was very anxious with fibromyalgia at the start as it can make you feel very peculiar from time to time. Perseverance is also a key even in the darkest days hold on to a glimmer of hope and cherish that positivity it will help you get through.

[jamie_86 in reply to Stevejj]

Thank you so much. Will look into your suggestions. It is tough and never felt this low before but will hold onto that glimmer of hope. Jamie

[Stevejj in reply to jamie_86]

Well done Jamie pulling yourself through this is the toughest challenge I have ever had and I got two kids lol. Keep going buddy you will get there chin up. Steve

[robpw]

I know how you feel , it took me over 7 years to get a diagnosis etc then I returned to uk in September and the doctor is making me start again as they don’t believe the diagnosis from Malta. I feel like I’m back at square one though not feeling any better for it