Undiagnosed

Hi, I'm new on here. I've suffered from knee and hip problems since I was 12 and now I'm 32 yet still the doctors and consultants have no idea what is wrong with me or what is causing my pain. I've been pushed from pillar to post and back again but everyone's answer is just take these pills and hopefully the pain will disappear =( Some days I feel it's easier to put a brave face on it all and pretend I'm okay rather than keep getting pushed from doctor to doctor who end up telling me they don't know what to do with me cos they can't find anything wrong with me because it's easier than seeing the disappointment on my parents faces as they have run out of ideas of how to try and help me.

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  • Hello licherup

    You are very welcome here. Advice, support and place to rant if you wush. No one judges you and we all have different srories to tell - all associated with pain.

    You said you were 12? Did anything happen to cause these pains? A childhood fall, accident or long forgotten ilness?

    Have these pains got worse over the years? What sort of treatment have you been given? Scns physio etc? And pills - what sort of pills? Have you bee referred to the Pain management clinic?

    Sorry for so many question but all these are the

    normal' route taken in hopefully diagnosing what and why this pain.

    Pat x

  • Hiya Pat,

    Thank you =)

    My right knee was the first to "go" so to speak and that happened when I was 12 it just suddenly gave way and locked and I was unable to walk, then as I got older my left knee started doing the same and then one day when I was about 21 my hips locked and I was unable to move my legs which was pretty scary as I could feel them but I couldn't move so I was trapped in bed. From the age of 12 to 21 I was just told it was growing pains but I was sent for MRIs and X-rays and put on anti inflammatory tablets. Over the years I've been on all sorts of pain killers but the last few years I've been on tramadol which don't touch the pain and I've done physio which unusually made the pain worse. I've don't physical therapy and last year I finally got referred to the Pain Clinic which took a lot of nagging my GP to send me there. I've only just got started with the Pain Clinic but they've put me on Gabapentin which works great for the right side of my body but doesn't touch the pain on my left side. I've been told I'm a bit of a mystery. I've seen Rheumatologists, Orthopedic consultants and surgeons, now I'm on to the pain clinic, so far no one can figure me out.

    Jo x

  • I smiled - you are definitely in the right place here then! Chronic pain is a mystery in itself. So many people who get to the pain clinic are never diagnosed and if by some chance you get a diagnosis then it is a bonus.

    So you have been through the mill and at least getting some relief.

    You will find out with pain clinic it is all about managing your pain. There is no reeal pain killers - just those that make it more managable. It may take months with them tring to get the 'cocktail' right.

    Hopefully they will offer you alternatives - maybe acupuncture which can work well with meds. Don't dismiss physio you have to go through a different pain as the muscles get broken down to start doing their job properly. Tens machine which makes the body produce its own pain relief - like acupuncture does.

    I also hope they have told you about pacing yourself? This is rule number 1`.

    Sadly all pain clinics are overworked and badly understaffed and funded. But stick with them - they are very good.

    Pat x

  • Yeah I've read a lot of people saying they're in constant pain yet no one knows why etc.

    I'm still just about hopeful that I will find something that will ease the pain so I can continue to live a relatively normal life. I work full time against my GP's wishes most of the time.

    I have a Tens machine but I don't find it helps but the pain clinic did mention acupuncture so I'm hoping to give that a try in the next few months. To be honest I'm willing to try anything if it means my pain is eased as I accepted a long time ago that my pain isn't going anywhere.

    Yeah I've been told I need to take it easy and try not to get stressed but on the flip side of that my GP tells me I'm too blasé about it all but I find after 20 years I can't sit in a corner feeling sorry for myself otherwise I'll miss out on the good things in my life. But sometimes I feel as if I can't tell my parents or friends when I'm having a bad day as they've been through enough with me already and I really can't cope with that "pity look" people give you when I'm feeling down.

    Jo

    x

  • I can't do links but google 'the spoon theory' if you haven't heard it. It is long and a bit fussy and more sickness than pain but the message is there for us all. Maybe show it to your friends and family.

    Pat x

  • Thanks Pat. I love this explanation I used it on a train once when I was called rude for not giving up my seat for an elderly woman cos I could barely move let alone stand up, and she told me that I should respect my elders and offer my seat cos I didn't look sick =).

    Jo

    x

  • Sorry Jo I have monopolised your post.

    Sure there will be other comments. Meantime there is always someone around if you want help or just a rant.

    Pat x

  • Ooooh I understand this.most pensioners walk bettervthan me aftervr tkr

  • I went to pain clinic very reluctantly, after four kneevreplacements I feel j know what I talking about. My doctor said thing they could do but was baffled I nit depressedvand on antideressents. My mental side is constantly fighting the physical

  • It feels great to have a rant on here kniwing others on here understand lol

  • Hi, sounds like a build up of compensation pain. Your first knee injury of unknown cause - maybe you twisted it suddenly, or pulled something but didn't feel anything at the time.

    We protect injuries naturally, by limping or taking more weight on the other side. So your left knee has had to work harder. This is probably why you have pain in both knees - one is injured and the other is compensating.

    Left untreated, other joints join in, and they can lock up too. Hence your hip problems. Your body is doing what it is designed to do, slow you down to let the first injury heal. Except it is now out of control. If it remains untreated, it will eventually include your lower spine, then your upper spine, shoulders etc until your whole body is locked up. Believe me, you don't want to go there!

    Good news is, it can all be reversed if you see a sports phyio. They understand these mechanics and pain pathways, and will give you effective exercises to do to encourage good muscle action. Muscles are out of sync, tight when they should be loose and vice versa, and pain happens when you try to use them normally. They use a variety of manipulation techniques which may vary from visit to visit. They work by breaking down the layers of compensation and will treat the original injury if it is still there. They don't dish out strong pain killers either as they tend to be ineffective for this kind of pain. They also need to know how your body behaves so that they know how much work to do at each visit. Over time they will work on your whole body to rebalance it. As you learn how your body reacts you will learn positive ways to protect it.

    Treatment can be very painful to begin with but the more your body gets used to it and if you do the exercises as instructed, the less of a reaction you get. You can get fatigued too as a great amount of tension is released, so choose your appt time carefully. It can be a lengthy process, but you can do in a month on a month off. Just let the physio know so they can plan things.

    It's a huge commitment, physically, emotionally and financially, but it does work and relatively quickly. I had loads of untreated compensation pain which sent my whole body into spasm 8 years after the original injury. I've had very intensive treatment from various therapists including a sports physio, and I wish I had gone to them first. I'm now at the point where I know how my body reacts in situations and I can plan around it, to prevent worse reactions. I still have pain, but at low levels that can be blocked out, and I have loads of exercises to do, but they don't take long - 10 mins x 3 a day. I meditate to keep my body as relaxed as possible. And I have to walk everyday. It was discovered that I have a congenital abnormality in my lower spine, so I will never recover fully. I get top ups a couple of times a year just to make sure things aren't getting worse. And the sports physio is the first place I go if I get an acute injury, go straight to the person who can help. I've not been to the GP about my pain for about 6 years. I really don't see the point in wasting their time, consultant's time and NHS funds when they are clearly unable to do anything for my pain. Just wish the NHS has sports physios, even the back specialist physios are lacking in some essential knowledge.

  • Due to doing sports when I was younger I have seen a sports physio many times but they also don't understand the pain. x

  • It's actually nice to speak to someone who has a clue what it feels likes dealing with pain every day. Thank you it'll be nice to be able to post somewhere without worrying people will think I'm attention seeking or just moaning for the sake of moaning =)

    Jo x

  • Gabapentin deals with nerve pain so maybe the side that the drug is working on is nerve related - the other side just might be a different problem? Sometimes our aches and pains are caused by different issues yet we feel it must all be the same thing. I have multiple issues with different causes - strange but it might be true that you have different causes that are happening by coincidence. I suffered in the past from a cruciate ligament problem in my knee where it just went' one night and was very painful - this might be an issue with ligaments?

    I know it's awful but you must find a Dr who you trust and you feel is taking you seriously with a proper plan to diagnose you and that is time and energy consuming but please don't give up as you deserve some answers and relief from your pain. The mental strain is huge but be strong and check in on here to let us all know or just to have a rant - we are all here for each other for support. I'm pretty new to this site too but have found it a God send - I hope you do too.

    Kind wishes x

  • Thanks for the reply Tracy, I will have to have a chat with my GP thankfully I've managed to find one who I feel comfortable and confident with. My last GP suggested to the hospital that it was all in my head and I wasn't actually feeling any pain. x

  • Could you have hypermobility syndrome ? Google it

  • Thanks I will take a look into this x

  • Hi Lilcherub, welcome to the site. Know how you feel it is very hard to deal with doctors who suggest there is nothing wrong. It is easy to, to get into the rut of saying everything is fine when in fact it is not. The emotional effects also cause strain on your health. No one understands what it feels like to be in on going pain only we who suffer it.Patience is a virtue they say but over time you run out of it when you are in pain all the time as well as the effects of painkilling drugs and the emotional strain. Not everyone is able to keep up the fight for an answer it is so wearing. But you have come to the right site we do all understand how it is. Hope to read more of your experience and support you if we can, have a good day with as little pain as possible.

  • Thank you Katie, I agree it's all very draining and my defence mechanism is sarcasm which doesn't go down well with any medical professional apart from my GP who understands that it's just my way of dealing with it as I like to try and keep my life as normal as possible whereas most doctors would prefer to put me on the sick rather than try and help me live my life. I'm very lucky that I have good support from my family and friends but I feel that it's all very draining on them as they've been through it all with me just without actually feeling my pain. x

  • It does effect your family too as you say, you say you went to Rhuematologist, but nothing on scans, beware I have had similar replies even doctors sometimes vary in opinion I have classic osteo arthritis signs but the hospital says I don't have it as it can't be seen on a xray but it can be seen with the human eye, i.e distorted and swollen joints. Joint pains can be caused by many different types of arthritis, muscle disease, plus systemic illnesses to do with internal organs. The list is very long. but it is rare for all possibilities to be investigated, just as in lung conditions unless it is blatantly obvious whats wrong, many similar symptom illnesses are not investigated unless we persist. But time passes and often we just pass the symptoms by too.

  • It's definitely been tough on my parents not being able to help but insisting on doctors listening to me etc. No nothing from the Rheumatologists, although I have low arthritic markers nothing shows up on scans or would result in the kind of pain I have according to the specialists. This is what they can't understand as my knees swell on the outside but there is not inflammation on any x rays or scans. According to the Orthopaedic surgeon I have perfect knees and hips (bone and structure wise) for a woman my age.

  • Weird isn't it Lilcherrub?, must be something not working right when they swell, But what is the question. The swelling probably causes the pain, does anyone else in your family have this? could be an hereditary thing!! just a thought. Bit like the COPD cough I have the specialist said he does not recall anyone with such a severe COPD cough as I have. Some things there are no answers for we just have to tolerate the symptoms. Enjoy your evening

  • it is weird. Thankfully no one else suffers from it although I'm holding out on being diagnosed with arthritis as my dad has it in his lower back and one hip so maybe once I get to 35 they'll just tell me it's that.

  • Very likely, arthritis runs in families. If it is hereditary you often get it younger. Not the diagnosis you want really but a diagnosis is better than being told nothing is wrong when deep down you know there is.. Good luck

  • Thanks Katie, I hope I will get there in there end just so I know what's causing it but for now I'd take less pain every day x

  • Ill second that as I am sure many others on this site would too x

  • Totally different case for me - it's my feet. After years and years - finally saw a Rheumatologist. Have they ever referred you to one?

  • Yeah I've seen a Rheumatologist a few times over the years but they can't find anything on scans etc. x

  • Hello lilcherub,is it possible to ask your dr to be refered to a hypermobility/Elhers danlos specialist,another post mentioned it too,I was diagnosed when I was 24 years old,knee ligaments caused me major pain,as well as lower spine,hips,shoulders,you mentioned problems from 12 years old with your knees.It is a genetic heritable condition so another member of your family may have it,doesn't always lead to chronic pain,sadly no cure but can help you understand why your body is hurting.Professor Grahame,I think he will be retired now,but he's written some good books on this,his field,there is a Hypermobility support web site too.But your rheumatologist may have looked for this already,but if you are like me it wasn't that pronounced,I'm 51 now and was hoping I'd start stiffening up,but not so far,but may help you if they look at how far your joints will bend,it's called the Beighton score.contact me if I can help

    Wendy

  • Thank you Wendy I will talk to my GP about it and see what he says. It would be nice to be able to explain the pain although these days I've finally accepted that I may never know but I may find a way to manage it so I'm not in such constant pain.

  • Many GPs haven't heard of hypermobility syndrome, or don't believe it's a type of Ehlers Danlos syndrome. Check out the Beighton score and take it with you if you meet the criteria

  • Hi Rowantree, I've checked out the Beighton score and I can't do any of the things they ask you try so I'm not sure whether to mention it to my GP or not now. x

  • So sorry you have suffered so much with your pain I have knee problems

    I have just brought a knee support just wonders if you have tried a knee support and are they helpfull

  • Hi Yorkie, I have knee supports but I don't find they help me. x

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