How many of you have struggled to get help from health professionals after being diagnosed with fibromyalgia?

[welshbassist]

[welshbassist]

I have been diagnosed with fibromyalgia and eds type 3 early this year but when I go to my gp to get help and advice I just get told that it iss all in my head or that there is nothing they can do for me. Wha help do other people get to help them?

[welshbassist]

Yeah I was seen by a rheumatology specialist and diagnosed in january but I am showing classic signs of rheumatoid arthritis but when told my gp, I got told it was all in my head lol. Im from north wales

[anbuma]

i have been struggling for the last 2.5 years to get answers and things diagnosed from my dr and rheumy.he is putting everything down to fibro IBS and bloating when it is clear I have symptoms of lupus(butterfly rash on face,nasal sores and swelling etc in my hands).also my abdomen is swollen lumpy and hard and he puts it down to IBS which I know I don't have-no symptoms.i have the same as many others and it must be a cyst or tumour-definitely a solid mass.i discovered I had gallstones when I saw a private gp in January and having the op on Thursday and he said to me when are you having the op.felt like saying you never found them so why concern now.my rheumy told me i need to diet cos I weigh 13 stone but the extra weight is all abdominal (another reason why I believe it is a cyst).told him that but he ignored me.now I have a thyroid problem and they wont recognize that either.ENT consultant told me my nose wasn't swollen even tho he had never met me.why or why do drs ignore visible symptoms.will find out who is right wheni have my gallbladder removed and they find my "baby bump"is something.

[crissy]

I did have prob with one dr who thought it didnt exsist i told her i was not happy with her attitude and would never see her again i now see a dr who fully understands snd who is supportive i slso sent the other dr info on fibro x

[sophie22]

I have had fibro for 10+ years if not longer, since diagnosis 5 years ago I have had not support from health professionals, I have seen all the specialists and each said yes, Fibro or chronic pain syndrome, nothing we can do. Some times I am in so much pain I cry and wish I was not here, I had to give up a good career which I loved, I am 56 years old and struggle through each day without support, no one explains what you are entitled to or how to manage chronic pain. I am constantly in pain, some days can hardly move, a good day is being able to go for a walk. I am sure not all my health issues are fibro related even the Doctor feels this but we cannot get past the fibro diagnosis with the specialists, even my GP gets frustrated. My eyes are now in trouble all of a sudden and my teeth, as usual its the fibro! I am very lucky that my family are so caring, but even they don't understand how you go from working 60+ hours a week to struggling to get out of bed in the morning, or stay in it at night (due to pain). I have found that if a bottle of pills don't do the trick, then the NHS does not want to know. The vets would not be allowed to send an animal home in chronic pain, they would end up in court so why are GPS allowed to ignore chronic pain? I am in pain today from the top of my head to the bottom of my feet as well as having a chest infection, does anyone care? NO! My heart goes out to all who have chronic conditions, there should be day care centres were people can go for massage, pain control, hydrotheraphy etc. Despite all this i am a very positive caring person, I hope the NHS will become caring soon for all our sakes! Gentle Hugs to all !xxx

[budgiefriend in reply to sophie22]

Those are my sentiments exactly! I feel so sad that you are being treated this way. I have been treated similarly. How can we make OUR NHS a more humane organisation????

[Julesq27 in reply to sophie22]

No Sophie

I know what you mean and understand your frustration, I had a referral made to the pain clinic so they can diagnose my chronic pain, I went there yesterday and the consultant told me thtA I'm only there for back pain and that's his speciality, I truss explaining what my GP was trying to accomplish through the referal, but he got very defensive and called the nurse in , I think he thought that I might attach him because I was so frustrated. I ended up in tears and I had to tell him what I suspected I had, he then asked me if I had irritable bowl syndrome, even though I already gave him a list of my symptoms and showed his a folder where I had a body picture with all my pain with dates times etc for the last two weeks including how I felt each time. He didn't even look at it and just said do u know what fibromyalgia is ? I was confused by his question then he said its Latin for muscle pain! All what has muscle pain got to do with bowls syndrome ? And if you can't control your bowls and stand a very good chance of pooping yourself then I would think that's a disability. I'm fed up of it all and sing passed from pillar to post because nobody listens. Nobody really cares to be honest, he also told me that I have depression Ns I said yes because nobody listens and they referred me for shrink even though I told them I'm already seeing one. It's awful and I really feel sorry for anyone that has to both rough this.

[welshbassist]

I can completely relate sophie22 and anbuma. The one thing I am trying is to be referred to the pain clinic to see if there is any other way as if i go to my gp its either my fibro or I have depression. I do feel that we all need someone to turn around and try to help, I think that if that did happen it would give us all some hope. I am on other websites and it is unbelievable how many people who have been declined professional help as it is either all iin their head, or they cant help as its incurable. All we can do is keep trying and as crissy said, inform gps who have no idea. I dream about a day without pain as you all do, but at least we can be here to support each other xx

[anbuma in reply to welshbassist]

thank you welshbassist where would we be without each others support.?.have been home 2 days now and although my stomach Is not sore around my belly button it is still painful .my stomach was swollen enough before and it is even more so after my op.as well as painfully sore will I lose this eventually?.stitches have fell out of two of my scars but not the main one.my dr told me to make an appt to see him in sept.-I will tell him my symptoms/concerns again but will he listen to me.??i didnt get to speak to the surgeon before my op to tell him I believe it is a cyst/tumour.

[sylviajones]

i don,t go to the drs any more lost all belief in drs,, am feeling very down just now, my feet and hands are swollen and i mam getting forgetful, my partner does not help he is useless, he does hardly anything yet he got me job cleaning for the man next door he gets care allowance for him yet i do the work, i am so fed up , no one understands or really cares, i am wondering if this life is worth keeeping any more

[welshbassist]

It is always worth keeping sylviajones. Is there anyone you can talk to about these issues as you shouldnt have to go through this alone. You can refer yourself forr counselling and they may be able to do something for you. Hope this helps x

[bluebell10]

i was told theres nothing they can do & just to keep taking pills,its like they dont care x