Fobing us off

[Bulldog6560]

Hi for sometime now I have been having pain in the whole of my body I have good days and bad days but in pain most of the time I have had xrays blood tests and so forth I have had a whole ansomble of medication to which I found tramadol and cocodomol together with amitryptaline dull some of the pain all through the this pandemic not one professional said I was doing anything wrong until I got a phone call saying I should never have been aloud to be taken them together and how have I been getting the medication and was told I have to stop and they stopped me from taking tramadol there and then lowered my does of cocodomol and amitryptaline I understand they had other problems going on with a world pandemic and I am just a nobody and things are going slowly back to normal I feel like I am been punished for living a genuine nightmare everyday now j have been for every test under the sun and I keep telling I have got all the tell tale signs for fibromyalgia and have some health professionals say it sounds like it could be that but then consultants saying they do not want to put that label on me but everything they have done have all been inconclusive and all the symptoms i have do point to fibromyalgia so why are these medical professionals not getting the obvious I used to be a very active person and like to play most sports now I cannot I have been reduced to not really leaving my house unless I really have to as when I walk the balls of my feet feel bruised and hurt I had never really heard of fibromyalgia until I was searching my symptoms and it came up in a search I did and everything listed is what I have to endure every single day why can't a professional diagnose me instead of leaving me in limbo the not knowing is very stressful in its self without all the other stuff I have to deal with I also feel like they do not want to give me that diagnoses as there is no know medical reason for it just speculation which is not there way of thinking is it and maybe they feel deadfeated when giving the diagnoses of fibromyagia as if it's were the last resort are we give up yeah you got that well reading all these post on here of people waiting for so long for there diagnoses come on people in the medical profession get your finger out and help us properly I stead of fob in us off with a list of stuff to do for something you don't know much about you need to listen to the patient they will tell you what is working and what they think might work not I cannot do this for you because such and such or we need proper answers and fast diagnoses

[Cat00]

Getting a diagnosis of fibromyalgia is not far from being fobbed off anyway. It doesn't really give you any answers unfortunately.

[Sally444]

It is a difficult one but I saw my diagnosis as a positive. I spent years getting so angry with myself for not being able to do all the things I wanted to and I had no known reason for this constant exhaustion, stomach problems, back pain. sore eyes etc. (I thought I was going mad) but now I feel like there is a reason that I feel so unbelievably tired all day and it's not just me being ridiculous and my doctor and others are being supportive and doing their best to help. It's very frustrating and not a nice thing to have to deal with and each day is a struggle but people are researching it all the time so fingers crossed some more help will be available in the near future. I hope you get some better pain relief soon.

[LisaSnow FMA UK Volunteer]

Sorry to hear of your frustration. What do you need help with from us?

[Bulldog6560]

I would just like all my 2ing and throwing to be done with and someone to say yes you have got fibromyalgja I have had all tests no to man done so is it so wrong to label me with that condition which I know I have and other people in the profession say it sounds like that's what you have what else is left for me to be tested and proded with the not knowing is very stressful in itself so basically is there anything I should be saying or doing to get my diagnoses and what medication or life style changes is best for this condition as I think I have keep fighting the system and hopefully do not loose my family in the process due to the stresses on my family too due too massive changes in my life which affects everybody around me I have no friends anymore I hardly ever leave the house always tired and body always feels bruised and still it is not known what is wrong with me they suspect it could be this but do not to label me this has been going on since Sept 2019

[Kitten-whiskers]

I think sadly that is common place, even after years of battling for a diagnosis and finally getting one, they are not anymore help. They just look to mask your pain with endless tablets which cause more problems.

On a happier note - I have found that Dr Leon Chaitow book called muscle pain and Fibro absolutely so helpful, he also has you tube videos, helped me so much.

Best wishes

Debs

[redmaple-5]

It a long drawn out process to diagnosis for most unfortunately. Have you been seen by a rheumatologist?

[No1wthayla]

There has been a bunch of medication abuse for items like tramadol, cocodomol, percocet, oxycodon, and so on. I even think amitriptylene might be considered a class A drug. The doctors have all been told to cut back or eliminate the prescriptions for as many as they can. That should help with reduce dependency on the medications they prescribe. But it does cause some major withdrawals when the patient gets them taken away. The doctors sometimes try to adjust your dose down slowly. That is the best way, IMO, instead of just stopping them abruptly.

I guess a lot of it is having a doctor who listens to you. A doctor who understands the pain associated with Fibro. And a doctor who will stand up to the insurance companies and tell them "My patient needs these prescriptions" and "My patient is being monitored while taking these medications." Without that doctor, you will fight for every single thing you get.

And with no one committing to the Fibromyalgia as a recognizable disorder/disease, you can't get treatment. The doctors are stumped at the idea that they cannot understand this problem. If they would just try to find medications that help with the symptoms. Then they can categorize the symptoms into 80 different diagnoses if that is what it takes to help the patient. I would rather have a lot of diseases over experiencing the full pain that my body is in every single day.

Hang in their Bulldog6560. That's all you can do. Here in the US, even dentists tell you to take Tylenol or Ibuprofen for pain after dentistry work. They don't even give you Percocet or Oxycodone so you can at least be pain free for a night and maybe a day after. Ridiculous if you ask me.

[LisaSnow FMA UK Volunteer in reply to No1wthayla]

Fibromyalgia is definitely a recognizable medical condition in the medical community, with its own ICD code. What makes it difficult to treat, or being validated for disability, has more to do with sero negative nature of the disorder and a wide variability in disorder presentation.

[Cat00 in reply to LisaSnow]

Hi what does sero negative mean?

[LisaSnow FMA UK Volunteer in reply to Cat00]

Undetectable using serology assays.

[Cat00 in reply to LisaSnow]

Thank you I will look it up!

[Hidden]

I know exactly what you are going through. Please persevere and don't be shy in telling your GP each and every symptom you have no matter how outrageous. It is only when they can eliminate all other possible diseases or conditions that fibro is diagnosed. That has been my experience anyway.