I feel quite lost as I have been diagnosed with Fybromyalgia after many years of pain and tests. The issue I have is no gp or specialist will speak to me about it. When I bring the subject up I get silence. This is over the phone as I have not seen a GP for 2 years. I was referred with my Degenerative Disc Disease to the MSK clinic. When I brought up the Fibro with the consultant. His reply was that its all in my head. I also have Atrial Fibrillation which is under control. I am just lost as know one will entertain me or discuss my Mri. I had to view my results on the NHS app and try and translate via Google. I tried ringing my gp and he simply said its improved and ignore the rest! I went into hospital with a severe disc rupture in L4/L5 and was potentially going to undergo Surgury. I now have two collapsed disds, 3 bulges, fusion, Osteoarthritis, which in my mind isn't an improvement 4 years on! So I'm at a loss and feel alone. I'm on 600mg Gabapentin 3 times a day, which dulls the pain, but does not on a bad day. Tia.
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Gaddmeister
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You poor thing. It’s appalling that there are so many health professionals who do not recognise the condition.
This forum is wonderful for advice and for being genuinely heard and listened to. The people who run this group are incredibly helpful and may well be able to advise you on which professionals may be best placed to help you.
I really hope you get the help you need - it really isn’t acceptable for your GP to be so dismissive of this.
No comfort I'm afraid but you are one of many. The pandemic and subsequent non-availability of GP consultations is not helping but my experience is much the same as yours. I do not have the other conditions you mention just the fibro but I have never been properly diagnosed and offered any treatment so I have learnt just to put up with it. It is continually painful and makes me miserable and I am very worried about my fitness levels which were excellent for my age (I'm nearly 70) but they are declining rapidly as I find exercise painful. I was a swimmer and cyclist a few years ago but if I try to take part in either activity now I cannot sleep due to pain and am in agony the next day. I do still keep up with a voluntary job which I love but it involves a lot of standing and I feel I am approaching the end with this.
I feel sorry not only for you but others who are being forced to suffer in silence, where "professionals" who's job it is to help, diagnosis and take action if required by sending the patient via a referral to a specialist in the area that is still undiagnosed. When you have a GP consultation, whether by phone or Face to Face, he gives a general overview of the problems you have and if necessary prescribes "drugs" to hopefully fix the problem. You have to remember that the drugs prescribed by your GP are ones that cannot be bought over the counter, and if the course of tablets/injections/treatment is over a prolonged period then with tablets you have to finish the course.
Some drugs take time to get into the system to do any good and taking them for 2 days and thinking this is no good its not touching my pain. Then in a week, unless the side effects are that bad, which I have had, ring again even if its passed the 08:00 am times and explain to the receptionist what is happening since taking them and the Doctor may ring back to get you back in for a review of medication. As you also have to realise that one tablet that's O K for me may not suit you.
It could also mean that a referral to a specialist is needed, where the treatment will continue.
That's how its supposed to work..... What you write is so familiar that probably everyone reading your post has had similar experiences. This does not make it right.
You should really go back to the people that gave you a MRI or X Ray as if they have given you details of impingements and remembering where or how they formed, you are entitled to a proper diagnosis, since the next stage is to operate, because the spine is collapsing and the discs between the joins are badly work, You need to tell the doctor that he needs to go to speck savers since the pain is in my back not my head?
No all joking aside. You need to re-establish contact with the assessment team and ask them for an explanation in English that you can understand, as although I have googled the answer to terms used. GOOGLE does not tell me where to next?
You deserve a correct assessment because how do you know the tablets you have been given are going to help you? If its Fibromyalgia, or degenerative disc's there is really no coming back from it and early intervention is what is needed.
These are my opinions as I have a collapsing spine like you and also other problems caused by bloods and tablets.
Hi,Like several other replies on here, had a similar experience. I had years and years of unexplained pain and occasional trips to the see the gp. If i had gone every time there was an issue i would never have been away from the place! Anyway every time i went i was dismissed with a you need to get on with your life, dont dwell on things. There doesnt seem to be anything wrong with you i think its all in your head.
Eventually diagnosed with trigeminal neuralgia and fibro after seeing a different gp and ENT specialist. Sent for an mri. Never heard anything back from that, lots of phone calls from me, no one knew anything! Eventually told that it was fine! and that was that. When tried to find anything more out was told there was a narrowing of passageways, but nothing to worry about, but this is another thing that seems to cause pain.
still a year on have never had the opportunity to find out anymore about it. I have been offered meds gabapentin but thats it. No one will speak to me.
I have been admitted to hospital where they were amazed at how little has been done and the lack of help and support.
Discharged from hosp and back to my normal life, no follow up from any health professionals.
I think you have to really fight, but many of us just do not have the fight in us to get the kind of care surely every person deserves.
Hello, I am sorry to read of the lack of support you are getting, surgeries normally have a practice manager so if you feel like your doctor is not seeing you one to one they will look at patients responses if you ring as you need to see a GP rather than everything being done over the telephone, 2 years is along time and also you’ve properly not had a review with your medication and any check ups ie , blood pressure, bloods tests. I would differently push for a face to face. As for the Consultant he is not being very professional by making that kind of remark. Fibro is very real and still amazes me that these kind of remakes are still being made to patients. This why the forum is so good as we get too chat. Share the empathy and read experiences people have had . Pick up the phone and get that one to one for a check up x
I would try one more time and ask for a face to face appointment with your gp and if that is not available write an email to your doctors saying that you need more help and understanding for of all of your problems.Your pain is indescribable
Hi so sorry you are having such a hard time. It’s just not acceptable to say “it’s all in your head!” I have osteoarthritis & fibromyalgia & went for a steroid injection in my knee yesterday for my arthritis pain. I mentioned to the Professor who was doing it that I had fibromyalgia & he said “ Oh you don’t want a diagnosis of that it’s where they plonk everything they don’t know what’s happening!! “Some people have say toothache and they say it’s fibromyalgia & every ache they seem to put down to fibromyalgia !” I was quite flabbergasted that a senior medic thinks that way. I just said it’s very real and very debilitating.My GP who is fairly new at our small practice has been quite sympathetic & sent me for scans X-rays podiatry & physio and I can’t fault her. We just need more research into this chronic condition.
It's shocking really. I was told a few years ago that I didn't have IBS as it was a woman's disease and a mere flutter in your tummy! I was flabbergasted!
I feelYour pain and your not alone in your situation
I think the pandemic has left us with many issues about seeking appropriate care and healthcare has almost become DIY
After being at rock bottom I decided to take matters in my control and have started ‘ The pain Toolkit’ so learning how to manage the pain differently. This decision follows a similar experience to you ie not being able to get the care I needed for all the issues I was struggling with. It’s not an instant answer and is definitely work in progress and a learning curve.
Do you see a rheumatologist ? They can be helpful and if you decide to follow The Pain Toolkit you need support from friends and family and healthcare professionals.
I saw the rheumatologist yesterday and they admit they know very little about Fibromyalgia and how our brains perceive pain and it’s taken a couple of years to get a diagnosis . Unfortunately there are few treatments for it … and self management can improve things and help you feel in control of it rather than it being in control of you
I’m here if you need any other advice sending you a hug
This is horrible for you Tia. My heart tells me that you should ring the Samaritans and ask them to help. I think they would get you more support even than an MP. There are awful things happening in the world right now too and someone who is already suffering can feel even worse. I've mentioned this before to others. Their service is not just for people thinking about ending it all. They understand deep human misery and suffering and just want to help. They have Contacts and maybe they can put you in touch with a better doctor. Just google Samaritans and the name of your locality. You will get a phone number posted. Ring that and they will listen in a way others do not. Gentle hugs to you. J.
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Feeling alone
Feel so alone tired and in pain
Feeling like no one understands
Feel totally alone and abandoned by everyone in the real world:-(
