Pain

[hitman57]

Hi is there any one else gets treated the same by their doctor and hospital as they keep telling me that this condition is just there way of saying it’s all in my mind ? I don’t know how that works as they have put me on painkillers I think the doctors and hospital are being rude and it gets me down as I don’t get much help

[NNutmeg]

Hi, I was diagnosed this week, but i have to say the rheumatologist was very good. I haven't seen my GP about it yet, but mother has Fibro also and has had mixed support. I think the issue with the condition is that it cant be identified easily. But Fibro is recognised as an illness in its own right and the NICE guidelines are there to support us. There is thought around the condition being caused by a lack of certain hormones which interfere with the pain receptors. This effectively means it is "all in the head" but not in the form if it being a mental health issue, more with the brain not receiving the correct information to control pain. we cant control this, only live with it and manage it. Keep strong, stay safe and know that there are people out there who do believe you and want to help. I hope you find a professional who can help you soon.

[hitman57 in reply to NNutmeg]

Thank you so very much you have put a new light on it for me as I thought I was going mad with it all

[SS1224]

Hey. I struggled for many years before a diagnosis as fibromyalgia was not recognised by many doctors. After I got diagnosed I was then told it was possibly a result of mental trauma. I took this to mean they thought I was making it up but what they were saying was a emotionally traumatic event had manifested into physical pain. Some doctors are still dismissive as they don’t know as much about the condition. It is getting better though and more recognised. It’s very frustrating to deal with as it feels you constantly have to prove you are in pain. x

[Whiteclouds in reply to SS1224]

I’ve been in pain for 4 years I told my doctor I thought I may have fibromyalgia as al his tests and scans came back negative his answer was yes you possibly could have Fybromyalgia but each time I ask a different doctor in the practice they tell me I cannot have a diagnosis because there is no definite way to tell if you have Fybromyalgia and there are no tests😳😩

[SS1224 in reply to Whiteclouds]

Yes! This was the same issue I was having. My G.P referred me to the rheumatologist at the hospital. It was him that diagnosed me after everything else came back negative. They do tests such as pressure points and just ask about symptoms. Mention things that you do not feel have a connection as they sometimes do. Maybe a list of points you want to mention. It is disheartening but you will get there. Also ask about pain management clinics and physiotherapy. All these things help with getting recognition of your pain. At one point I started to think I was imagining the pain as I was getting nowhere! It’s very real though but it’s unfortunate that we have to struggle to prove it due to no tests x

[Whiteclouds in reply to SS1224]

I begged the doctor to send me to a pain clinic she told me it would not help I still insisted she eventually said someone would ring me back they never did that was 5 months ago and now with covid I think I have been brushed aside again I keep telling my doctors I’m in pain but it falls on deaf ears all I get is go to MSK classes to draw listen to talks and cookery ???? This will not help me as I have mobility issues due to nerve damage in my legs there have been times I have fallen my legs will not work I’ve told my doctor tors but they just look at me with disbelief and change the subject .

[Midori in reply to Whiteclouds]

It may be time to ask for Physiotherapy to help your legs. I attended a Falls Clinic in out hospital and it was pretty good.

Cheers, Midori

[simonsgirlie]

Hi, I know exactly what you mean and how dismissive the medical profession can be even down to ambulance drivers. I have had fibro for over twenty years along with arthritis and M.E. I am asked if I have any meds I take whenever there is an issue and I tell them but then they ask what I’m taking them for and as soon as I say fibro they roll their eyes and say anything else and one ambulance wrote on their form no medical history. My pain is so bad sometimes that I don’t want to go on and being treated like an idiot makes it worse. My Gp is more than useless and will never see me even before covid and to be honest I just deal with it in my own way now. I know it’s not what you want to hear but if it wasn’t for this group I don’t know where I’d be. Reading other peoples post keeps me going as I know I’m not alone. Sorry I just hate being told that we are maybe miss interpreting the way people are towards us. There are some really good doctors but they are few and far between.

[Whiteclouds in reply to simonsgirlie]

Hi it saddens me to hear that we have to suffer so much and GP’s don’t listen or believe us I have asked for help several times and have asked to be referred for physio but nothing happens I feel that now I am of the retirement age I have been put on the scrap heap and my age is why the doctors don’t do anything for me. There have been times that I have almost overdosed on pain killers just to stop the pain. Also I have no family so there is no one to fight my case if I’m not able or well enough to stand up for myself.

[sidsue]

I was so to speak sniggered at for many years due to lack of information lots called is another type of yuppy flu.. I was diagnosed around 1999... I am on a lot of medication although I am still in pain ..but just not as bad.. I have seen a lot od Drs and stopped going to Pain Clinics.. The Drs are right to a degree.. it is in the mind.. but not in a sarcastic sense anymore..I have had Traumatic times 3 times .. lack of proper sleep for over 20 yrs.. Trauma can mean a lot of things.. The medical staff should all be clear about .. all in the Mind ..if you think they are not being clear ..say so.. There are many Drs out there who do understand Fibromyalgia and the pain we suffer ..There is also Fibromyalgia help information and groups that will help make things more clearer for you ..

[Whiteclouds in reply to sidsue]

People who have never had this excruciating pain which moves all over the body and some times stays in several places at the same time just cannot even comprehend what we are going through I’ve been told I’m lazy and to get my backside off the chair and move I’ve cried buckets just wish someone would believe us

[sidsue]

yes I have been there too the last place I worked health and safety gave me a chair with my name on..as it was factory inspecting goods .. I could do it sitting down but the factory wouldnt let other staff sit.. I often went in to names being written on the chair ...lazy so and so favouritism ..old ,,, lazy ....... get fat lazy bum out of chair in the end I left...I had to work to pay off debt my family got into.. but the Employment or Job Centre argued I was fit for work so I had another 10 yr battle to get Incapacity Benefit ..now I am retired and get what I am given, too weak to fight anymore mentally and physically..

[Midori]

Sorry you appear to have a dinosaur for a doctor, It's hard to find a doc who actually understands.

If he is truly awful, you could ask to see another doctor in your practice, From experience I find that younger GPs are better, rather than just categorising us as nuts!

Alternatively, try another surgery. There are good doctors out there. Just gotta find 'em!

Cheers, Midori

[Whiteclouds in reply to Midori]

Yes you are right and come the new year I will enrol myself with another surgery