22 yrs old and I've been in pain for all of it

Bare with me as this might take a while to explain but I really need some advice...

Im 22 years old and I've been in pain for as long as I can remember. It started with being severely pigeon toed even when I just started walking - my mum would continuously take me to the doctors to be told that I would grow out of it.

Well... I didn't.

I've been going to the doctors for as long as I can remember with pain and difficulty completing everyday tasks (i.e. Getting out of bed, sitting for any period of time long than a few moments, doing any type of sports or standing for any period of time)

When I was 16 I started going to the doctor about issues with my kneecap moving more than usual and pain in my hamstrings and calf muscles.

They sent me to the physio without conducting a single other test. I completed physio and had to stop because the muscles of my thigh went into spasm and cause my leg to lock straight and be agony to walk on leaving me with crutches for 6 months.

After that the doctor did an X-ray of my knee joint and upon seeing there was "nothing visibly wrong" (I.e no breaks or fractures) told me their was nothing they could do and that I would probably just grow out of it.

I continued being in pain for another 4 years with physio not helping for another two. Then when I started going to uni I noticed a stiffness in my back and reluctance in my muscles to comply...

id just like to note at this point that I used to attempt as much exercise in the gym as I could manage when not in pain and eat and have taken and continue to take gulcoseimate and various other supplements.

Anyway, this stiffness made it impossible to get out of bed and my boyfriend would have to lift me out. This very much affected my studies and general life. I was in pain almost 24/7 and it got to the point where I rang the 111 service to ask for advice. They told me to take ibuprofen and book in with my gp. (Which is probably the only decent advice I've ever recieved)

I went to the doctors soon after and I want to note that this doctor is possibly the only one I've ever had who has actually felt like they even believe me in the first place.

He sent me to an oerthapeodic (excuse spelling here) specialist.

At this appointment the specialist did some basic manipulations of the joint of my knee and told me that he couldn't see the problem. For the rest of the appointment and substiquent appointments since then he has treated me like he doesn't believe a word I'm saying and that he just wants to get me off of his hands.

He gave me an MRI of my knees - which was the only thing I could persuade him to do. Really I know the problem stems from my hips, even the physio said this and I've told him repeatedly but he won't listen.

Almost straight after he booked in the MRI he told me he doesn't know that there is anything he can do to help me. But I've been left feeling like no body wants to help or thinks it's even worth trying. It is because of this that I'm now suffering from pretty severe depression.

I need any form of advice. How do I get doctors to listen to me?

I've been dealing with this all my life and I've always been told to suck it up but it's becoming debilitating and I'm frankly fed up.

13 Replies

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  • I'm very sorry to hear about your pain and you so young, but it's about time you seen a psychologist and try and work out what is going on, because there is something and you need to talk with a professional, because being depressed, should not be left to go on because it can have so many different manifestations in your body like tensions that will make your pain worse.

    Your GP should give you an appointment to see a psychologist that is with your local pain clinic and they should talk you through things and you can explain to them just what is going on ,again my condolences about your situation and in how it impact's on your life best Alex

  • I have been completing cbt and taking tablets for anxiety etc... but they haven't helped with pain.. thank you for your advice though!

  • Yay summer9422, my thoughts go out to you as I know only too well what it's like when doctors won't listen to you! I had to see a neurologist privately in the end rather than being binned off to a psychiatrist for chronic head pain!

    You seem to think your problem stems from your hips but I would have thought one of them would have suggested a full ct or mri scan just to rule possible things out? You have to keep on at your GP for various referrals until you get answers unless they're thinking it's psychosomatic? Who knows what they think and a few of them aren't very good!

    You have to keep fighting your cause and try not to let the pain drag you down too much which I know isn't easy. Good luck.

    Xene

  • I recently spoke to a new doctor and he has agreed to look at my hips to rule them out more than anything... he is hopefully going to do a full MRI scan of my back, legs, hips and feet!

  • Have you had any blood investigations before? Are your potassium, Sodium, or calcium normal?

  • I know only to well what it's like to not get believed about pain it took me 6yrs to find the right dr who upon looking at my Mri he couldn't believe i had suffered so long he had me in hospital for lower spinal surgery and it sorted me out until recently then pain is back with a vengeance but called my consultants secretary she gave me a appointment for Friday coming to get to the bottom of my pain I'm lucky I found such a great doctor

    All I'm saying is don't give up keep pushing if you don't get answers from one dr or consultant get another one to look at you I don't know where you come from but I'm under the Queen Elizabeth hospital in Birmingham England my consultant is Mr Navin Furtardo if your able to get to Birmingham ask your dr for a referral good luck keep strong and keep on at your doctors xx

  • Have you ever had your vitamin D and vitamin B12 bloods done summer9422 ?

  • No... I've never had any blood tests for this specifically. Why? Was there something specific you were thinking of?

  • Have they ever done an X-ray on your hips? It's just I've also suffered years of pain and backache and only recently has the pain really started coming from my left hip. It was all referred pain previous to this which also now effects my left leg right down to the ankle. I've had an X-ray on my back which showed nothing but they didn't do my hips properly at the time. I was born with dislocated hips. I remember the person doing the X-ray saying 'and it's your back you want this on?' as she was in the middle of doing it, like she had seen something in relation to my hips but couldn't be bothered. I had no idea at the time where the pain was coming from.

  • Stiffness, back pain, standing for not too long or sitting for not too long without being in pain, hip pain, knee pain can sometimes be down to low or deficient vitamin D blood levels. Low or deficient B12 can often go hand in hand.

  • I don't Know if this would help but I found a scan centre that does scans privately on your hips think they are called baby bond and they have centres all over the country. I plan on getting this done on my hips in the near future. They then send a report to your GPs. I am pregnant at the mo so will be waiting until after the baby is born to go(as doctors can't do anything now anyhow) but may be worth considering. You obviously don't need to be pregnant to get the hip scan done although primarily they are a baby scan centre they work closely with the nhs. Think its about 70 pounds.

  • See an Alexander Technique teacher who has at least ten years experience. You are going to need help to gain some body movement sensitivity. Physiotherapy does not do this.

    I would also suggest seeing a McTimony chiropractor. There will be useful for an opinion and some help in removing muscle microcramps of which I suspect you have a lot.

    You are going to need to learn skills concerning lengthening out muscles. Yoga should provide this. For one reason or another you do not have coordination in muscle usage and posture. Your comment on "severely pigeon toed" provides this information. Hence the suggestions I have made.

    It is going to be lot of work to develop the skills you need in investigating yourself. A useful skill to develop for this is mindfulness and meditation.

    Note: knees can hurt a lot if muscle and weight strain is put on one side of the knee and forces do not go done the centre. Joint okay but tissues receiving pressure they should not have and so they protest.

    Hope this helps

  • Psychologist first, it may take a year or even two.....in order to find something to give you your fight back, yes,really.

    Next , have you had a full blood panel done recently ? And maybe test for Lyme disease ? Not to scare you but just an idea to think about.

    I was crushed by a horse at 9yrs. I am now 44. Yes.....some days the will to even go on is tough.!! Remember that ONLY YOU are going to be the best advocate for your health so don't give up with the doctors . If you have insurance and a bit of the finances keep pursuing every avenue..... If not maybe inquire with a social service worker about what to do, because you feel like your slipping away at such a young age,and it doesn't feel any better the older you get 😉 I feel so blessed to have a great group of doctors willing to help me with anything that might be an issue . I have been going to the same group since I was 9 !!! But have mercy, no one has doubted my concerns, even if something didn't show up the first time. And OH !!!! Those sweet words of validation... finally, that yes, they see something in the MRI or Cat scan ,so you don't feel like your crazy. I'm saying prayers for you. You've got to keep trudging forward and don't be intimidated to request things the doctors might not think are necessary. Try to stay kind with the doctors that see you, sometimes I've even written a small Thank You note, whether they were a help or not. It can go a long way sometimes in your benefit, even if it sounds ridiculous. If any injections are suggested be careful how many you receive , Cortisone should only be put in one area a maximum of two to three times. After that it literally liquified my tissue inside, but we knew that surgery on one of my hips was inevitable anyhow, so the doctor was trying to help me buy some extra time. I don't know if any of this will help you ? I hope you can take something from it ? There are many doctors out there, do you have to get a referral every time you want to see one ? Your young to be wore down so soon. I'm glad it seems as if you have a nice boyfriend who's willing to help. My husband is a Godsend...... ( well most of the time, anyhow ) it's frustrating telling the same person your in pain, every day.

    Hang on, and keep me posted. If there is anything else or you just need to vent feel free. ❤

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