I have a long history of problems being put down as "functional". Recently, I developed new problems/pain, so went to my GP/physio and again they can't find anything wrong - I feel embarrassed and like I'm a time-waster. Is there any way I can tell going forward whether a pain/symptom is real, or not (I genuinely feel pain, even though it isn't real)? I'm inclined to just ignore everything from now on because I don't seem to be able to distinguish real pain from pain that's "all in my head". Any advice would be much appreciated.
Thanks!
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RedPoppy2
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Can you list the other "functional" symptoms you have been experiencing?
FND presents in different symptoms and it is real.
If you are feeling pain then it is real. Why don't you think you can distinguish between the two, is that just because you have been made to feel that you are wasting the GP/Physios time or your thought process?
I recall taking my son to a Physio appt, muscles etc all good very strong passed tests, letter read patient hadn't experienced symptoms of 4 weeks, recommend going back to school (or something like that) came home went to get dressed for school, legs gave way...
It's all a bit long and complicated. It all started in childhood - stomach pains and chest pains, but no reason found and prescribed valium. Pain in ankles as a child, diagnosed as growing pains, but it's never gone away, so I went to the GP with that in my 40s as it couldn't possibly still be growing pains. He thought my ankles were unstable, so referred me to physio, who thought my legs were weak and reflexes strange, so further tests carried out, which showed nothing was wrong.
Several years ago, I fell and broke my shoulder and immediately developed weird truncal spasms which carried on after the shoulder was healed. Referred to Neurology, lots of tests again and again told nothing wrong.
Now, I have a burning pain in my knees and was thinking possibly developing arthritis, as getting older, so self-referred to Physio. I also had developed a strange numbness in one leg and a nerve-type pain in my outer thigh on lifting my leg, so was wondering if I had a trapped nerve, so also asked Physio about that. Saw Physio and he examined my legs and again noted leg weakness/odd reflexes, so said he would have to consult with the specialist team. I pointed out to him that I had had all that checked out before and it was nothing, but he was adamant that he needed to check with the specialist team and that they would want to see me quickly. Then, I got a phone call from him, saying that he had spoken with the specialist team, who had checked my records (from 15 years ago) and were certain there was nothing wrong with my legs, so no more discussion about possible trapped nerve causing new pain. He made me feel like a bit of a fraud.
I also have strange episodes where I seem to faint, but they can't find a reason for this, so it is put down as psychological, which I accept as they can't find anything wrong with my heart etc.
I don't feel I can distinguish whether a pain is real, or not, as I genuinely feel pain, e.g. the new nerve-type pain in my leg stops me in my tracks, but I am told it isn't real/there's nothing wrong. If I get any new pains in future, I won't know if they're real, or not, without consulting the GP and I feel that they think I'm a hypochondriac/putting it on.
Sorry for the very long message - it's hard to put everything in concisely. I hope things will get better for your son.
Thanks, I think they shouldn't have cancelled the referral as a lot can change in 15 years.
The weird truncal spasms which carried on after the shoulder was healed could be a predictive error, like someone experiencing symptoms after the injury has healed. Like my friend who had a carpal tunnel op and once healed was still experiencing pain signals and was diagnosed with CRPS. So had to continue doing physio exercises regularly but knowing that everything structurally had healed, she accepted it was just an intensified signal gone array and eventually the pain she was feeling went away. As she was reinforcing the message to the brain that all is healed "see I can move my hand, slowly she gained full movement".
So with FND people can experience seizures and one such seizure is called a "drop attack", happens in an instant like fainting but has significant differences. Has anyone seen you fall?
Also, if your ankles legs were weak, I would have thought physio to strengthen etc could help. When my son was going over on side of his foot he had an xray was which showed flat footed and he had a few physio sessions, given home exercises using physio thane bands and used shoe inserts, he was signed off after third visit.
Yes, that's kind of what I'm thinking - it feels like anything I have isn't now taken seriously. I said to the Physio that I wasn't concerned about the leg weakness/odd reflexes - I just wanted to know if I had a trapped nerve and it feels like they've decided "no" just because I have other "functional" problems. All I wanted was for them to give me some exercises to see if I could release it and I've been sent away with nothing
The neurologist explained the truncal spasms like that - he said that my brain had got confused by the trauma of breaking my shoulder.
He was initially concerned about the reflexes (despite me telling him that it's nothing, as they have been like that for 15 years and I'm still here, which the specialist team then confirmed!) I'm not concerned about the reflexes, but would at least have liked him to check for a trapped nerve. The nerve pain started about a month ago - it's a very specific pain - a sharp twinge whenever I lift my leg, which is what's making me think it's a nerve that's catching as I move it. I feel like I'm going crazy, as it really hurts, but I'm told there's nothing wrong.
So if its a trapped nerve usually stretching etc can release. When I have had one in my neck, stretching, roll dpwn etc have released them. If not straight away just taken para for discomfort and then rested and used a hot water bottle to relax the muscle.
This might seem a strange thing to ask, what happens if you lift both legs together but pay particular attention to the one thats fine.
Thank you - I'll give that a go - suppose I could actually Google to look up some exercises. My husband did actually suggest that I could lie down and he'd pull my leg, but thought he was joking!
If I do that (lift both legs, but focus on the good leg), it still twinges. The pain is actually worse if I'm doing something that moves the leg in an inwards direction (like crossing my legs, trying to get in/out of the car, rolling over in bed).
Sorry, didn't read full message before. Yes, people have seen me fall. It's happened numerous times and an ambulance has always been sent for and I've ended up in hospital. Complete waste of NHS resources - I feel like I should wear some sort of band saying, "Please just ignore this faint".
Sounds like a "drop atrack", my son used to experience them regularly and I think it was his CNS becoming overwhelmed. With fainting you know your going to fall and will put your hands out to break the fall and probably sustain an injury. My son used to get injuries but that was because he quite often caught his head on the edge of the computer chair or desk.
Although he has always been at home, in the beginning it was A&E. I think you can be onconscious for 3-5 minutes. Maybe wear a lanyard.
Sorry to hear your experiences, just because there is no logical reason for pain, doesn't make it less real. I use distraction method to relieve pain as I can no longer tolerate strong pain medication. I had neurosurgeon look at scans and my symptoms, numbness on left side. I have numbness down leg and difficulties using left hand, he put it down to FND, it wasn't a put down, just fact. Just because something can't be explained doesn't make it different. I think too, we become overly sensitive, my family have said, if I think more positively my symptoms will decrease. They don't have to live with it 24/7. Stress does impact FND, but what comes first the symptoms or stress? Try focusing on relieving symptoms, it's difficult to get a good physio that understands. When life becomes difficult, try to find your happy place in your mind. Take time out on life. I hope you find peace with your diagnosis, just focus on one symptom at a time. Take care. Moni
Thanks for taking the time to reply and for suggesting things to try. I'm just worried that, going forward, anything I ask about is going to be put down to FND. I don't want to be a nuisance, so feel I shouldn't go to the GP any more, but then I think "What if I ignore a pain and then it turns out to be something serious?" So difficult to know what to do - I really did think this nerve-type pain in my leg was a pain being caused by something simple like a trapped nerve
Thats the million dollar question and it can be either or. Personally I think its a series of challenging events that can build up and it only takes another to tip the balance and your on high alert.
Then going through the health service and lack of help brings on added anxiety and sometimes when you feel lost, depression can kick in, yet if you are mindful of this, you can, like you say still do fun things that will bring you joy, albeit may have to be modified slightly.
Just been doing a bit of research, the burning sensation in your knees could be due to injury from your falls.
Also you could look at peripheral neuropathy:
Neurological causes of a burning sensation in the knee can be the result of nerve damage in the legs. This nerve damage in the extremities* is termed peripheral neuropathy. The resulting "pins and needles" or burning sensation in the knee is called paraesthesia. Some common causes of paraesthesia are nerve compression or entrapment, diabetes mellitus and alcohol abuse.
*,Although this usually effects the end parts if your body, the hands hands and feet.
Yes, you don't want them to ignore a real issue. I have lived with my diagnosis since 2018, but looking back, it probably started earlier. I have never been neglected, I have felt frustrated at times, especially when it comes to my heart issues. But I have to trust that they have my best interests at heart. Focus on what you can, don't get bogged down by chasing what can't be explained. The mind is amazing but can trick us, like when they use mirrors to scratch an itch on a missing limb. I have also lived with chronic pain for most of my 70yrs. Take care. Moni
So sorry to hear that you have lived with chronic pain for most of your life. My own aches and pains are bearable, if annoying, so have to be thankful for that! I'll try and not focus on the leg pain and hopefully it will go away! Wishing you well!
Hi, I was diagnosed with FND in 2018 affecting walking, talking and thinking. In 2022-3 I was assessed for Parkinson’s because of tremors but they put the tremor as functional and said it was probably part of the FND. I to suffer with pain (abdominal, chest and back) the abdominal pain is classified as medically unknown and chest is either COPD or GORD and back is osteoarthritis. So now they put it down as chronic pain. You know your own body and if it’s telling you something it’s best to get it checked out. I remember going to the doctor and as I was leaving I mentioned that I had problems swallowing he called me back in and put me on a 2ww for cancer (none found) and I was diagnosed with emphysema in the top part of my lungs (now in top, bottom and rear of lungs) . As they say it’s always better to be safe than sorry. Remember wherever your pain it’s your brain (head) that tells you that it’s pain it then down to the doctors to find the cause if you don’t know. If I have a symptom for 7 days and it’s not going I always tell the gp . Although some gp’s act poorly most want you to report as it gives them more information, better to help you. Good luck. Kevin
Thanks for your reply and sorry to hear about all you've been going through.
It feels like they're just going to dismiss anything I say going forward. I see the GP next week for follow up on a different problem, so think I will ask him then how I should handle any new pains etc. in future, i.e. go and see him or just ignore.
As far as I am concerned if in pain you should try to resolve it. Never feel like a time waster as you are not and to be honest I don't think they have ever found anything but asthma and vitamin deficiency for me. They have no idea about my IBS. My physio was same experience. Take each pain as it comes. I had awful knee pain for 3 months and now that's gone and my balance and dizziness are really bad. With FND you never know what to expect. I do understand what you mean but I am sure it's not all in my head and one day they might pool all sufferers genes and find some genetic cause that we all have. Best wishes
First off - symptoms by definition are what the patient experiences. So whatever you feel is definitely real. The problem is, medical professionals in general believe that they know everything there is to know about the body. So if someone experiences something outside of that, they tend to brush it off as not real, or all in your head. This is stupid and insulting. It's like if a stronger telescope were invented and a new planet found and then saying "it can't be real because we know all the planets"! Luckily, some neurologists are more open minded and are trying to figure out exactly what's going on in the brain with FND. It's definitely a real thing because so many people experience it and in a consistent way. Unfortunately sufferers are put into the position of having to educate themselves, and then their doctors about it.
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