If anyone has any advice 🌸

[erincath]

Hi everyone would just like to see if anyone could help me out. I'm only 16 and since last March I've had excruciating hip pain. I play netball but never had any problems and last year while warming up I felt a very tight knot in side of one of my hips while warming up that eventually turned into a very sharp unbearable pain, even just moving my upper body would send terrible shooting pains through my hip. It spread to my other hip within a week and I visited doctors who just asked me to come back if it didn't go away. Eventually got so bad where I was on tears everyday that I got took to hospital ( before they wouldn't take me as it wasn't a fall or anything that caused it) and I got a xray which was clear. This was about a month after it first came on and I was mow getting terrible shooting pains up my spine. It gradually got a little better but then got worse and to this day I'm still in so much agony and doctors have no clue. Been for mri's and they are totally clear, been to physio who said I had bursitis but my hip doctor disagrees. No painkillers/anti-inflammotries help and im honestly losing all hope of ever feeling normal again. Had so much knee pain recently too and had groin pain for ages my latest hospital appointment I was offered injections but the other doctor has refused me them so I have just been told to wait and see for a few years if it goes away as I'm still growing and "this happens quite alot to girls between 14-18". Also had blood tests everything clear too, tested for loads of things one of them rheumatoid athiritis. The pain is quite a few different things, it can be really sharp and i feel like im about to tear something or really deep and like mt joint is honestly ahout to come off haha. It is usually thorring to like tootache and feels like its spasmming. Its on the side of my hip or either side of my lower back at hip.Please somebody help me out feeling so down everyday with this horrible pain cannot remember last pain free day I've had. Feel like no one understands what I'm going through close to me and feel so upset constantly.

[Louisiana]

I am so sorry you are suffering this badly. I do know about pain - it is dreadful if it is constant and I have stood in the doctor's office crying and saying I will not move till he does something - have to be bad for an old lady like me to act like that! My only advice is to pester the doctors till they realise just how bad the pain is. Can your parents/family back you up in all of this? Let them speak for you if they can. I do wish you well and I so hope you will get the help you need. Good luck. Sorry I can't be of more help to you. Let us all know how you are getting along.......

[erincath in reply to Louisiana]

Thanks so much for replying! It's so horrible and terrible so many of us go through with this and still doctors have no idea how to help us. My dad is very forward and doesn't stand for things if he doesn't think it's right so he definitely would be he doesn't come with me it's mostly my mum as he's usually working during the appointments and because I'm quite shy my mum wants me to stand up for myself and not rely on her 😂 hopefully at my appointment next week we can both just tell him it's not good enough and I need something done. Thanks again and hope you find some peace!xx

[Louisiana in reply to erincath]

Let us know how you get on.....if you are still not happy I would ask your Dad if he could please take some time off and help out...if you don't explain things he probably doesn't realise how badly you feel. Good luck. don't worry about replying to this but I would like to know if things improve for you.

[Madlegs1]

Really sorry to hear about your troubles.

You've had so many tests and so many drs examine you- it's hard for anyone here to go past all that.

Scoliosis comes to mind at your age - but you say MRI s are clear.

Where there is disagreement between drs , your parents should be able to insist on a course of action for your best interest.

You need an advocate for your case as a minor. I hope you have someone who can stand up for you in your "corner".

I do hope things work out for you.

Cheers.

[erincath in reply to Madlegs1]

My dad has countless times argued with doctors but they just say that they are doing there best and he must stay calm and wait. Its so frustating but as I would never argue back with them as I'm quite quiet I'm glad he does it for me x

[earthwitch]

I would say you need to see a rheumatologist, and preferably a paediatric rheumatologist (as they understand the onset of inflammatory arthritis in your age group) - if it has been going on this long then you need to rule out inflammatory arthritis. Can you have a chat to your GP about the idea of being referred to rheumatology? Also, see if you can find out if any other relatives have either autoimmune disorders or inflammatory arthritis and make a bit of a family tree chart showing who has what. If autoimmune disorders do seem to run in your family, that makes a juvenile onset arthritis much more likely. The fact that nothing has shown up on xrays or MRIs doesn't mean much - if they were looking for injury on the MRI then they wouldn't have done the right kind of imaging sequences to see inflammation.

[erincath in reply to earthwitch]

I got tested for rheumatoid athiritis and it came back clear and my doctor asked me had anyone in my family had either rheumatoid or inflammatory but nobody has. Nobody in my family has ever had athiritis! while I was waiting on my test result my doctor said she would refer me to rheumatology so hopefully even though my test was clear she still does. One of my cousins (she is also 16) has ITP which is an autoimmune disorder but she is the only one I can think of x

[Madlegs1]

I feel so helpless in the face of your incredible clarity and woeful experiences. I have 4 daughters and 4 granddaughters - and I think its ok if I say I would give you a big hug for your bravery and wish I could carry your pain for you.

It's so good you have a supportive family with - I'm sure they feel just as frustrated.

I know you have been everywhere with your predicament but have you been to a really good sports massage therapist- one who has a good intuitive understanding of the human body. In Ireland , we have a lot of these and invariably they can literally put their finger on the spot and ease out any troubles. You need to go by personal recommendation for these people- they may be on the " fringe" of physiotherapy - but are qualified.

One lady near me can tell me which muscle is troubling me by just watching me come in the room. Scary! 😂

Thats my tuppence worth- I hope you get some satisfaction.

Remember- from what I've seen of you, you are a truly remarkable person.

Keep strong.

[Coastwalker]

Wondering if it is vitamin D deficiency, my hips, lower back pain and other pains all went once I was on optimal vitamin D3.

Do you have your Vitamin D blood results ?

If not you are entitled to a printout of all your recent bloods done, remember to ask for your blood results and their ranges too.

Does it also hurt when sitting or getting up out of chairs ?

[erincath in reply to Coastwalker]

Hello, sorry it has took me so long to get back to you totally forgot about this. I got my vitamin d results and they are suboptimal but my calcium anf eveything is fine and my doctor is talking about starting me on supplements so hopefully once I hAve started the pain will go away and I'll finally find the reason for it. Not too sure whether I can defo have the supplements tho as I have heart problems and can't usually take tablets like that. It definitely hurts v bad getting up especially if I've been sitting on a couch or if my legs aren't perfectly straightened out while sitting. Thanks so much x

[Coastwalker in reply to erincath]

Many now ask for a printout of their recent bloods and ranges, it would be interesting to know your result. Do find out and go to vitamindcouncil.com it is a top site for information on vitamin D. There you can find out if taking vitamin D with a heart problem is OK. Also check out your result against the vitamindcouncil.com chart.

Being sub optimal rings alarm bells. vitamindcouncil.com charts are more up to date than outdated UK NHS charts. Also you mentioned previously your spine, spine conditions 'can' be down to low or deficient vitamin B12.

Low/deficient vitamin B12 and Low/deficient vitamin D can go hand in hand.

I also can have groin pain if I forget to take my vitamin D3.

Vitamin D3 is anti inflammatory, (good for arthritis, plus many other illnesses and as a preventative too,) vit D3 can help knee pain, I know personally of two people whose knees are better using vitamin D3 after they tried so many other cures that did not work.

For safe up to date high doses vitamindcouncil.com

My Doctor only gave me 1000iu of D3 and told me it was a very high dose which I later found was rubbish.

On my prescribed 1000iu D3 dose I noticed that all my other pains That I did not mention to my Doctor all went overnight too, but soon all came back again within a few days. (sciatica, restless legs at night, stiffness and lower back pain, My Dr. said nothing was wrong with my hips previously, yet they were excruciatingly painful, also Doctor diagnosed me with tailbone pain and said I would never get rid of it, just learn to live with it. As soon as I took 5000iu of D3 recommended by vitamindcouncil ALL pains went away, including my hip and tailbone pain that is not supposed to be curable and these pains only come back within that same day if I forget to take my D3.

Do let me know how well you get on with your supplementing erincath. Pleased you got back to me.

[johnsmith]

Get your parents to see an Alexander Teacher. They can give you some help in managing your pain and discomfort. Muscles can generate a lot of pain and discomfort if used incorrectly.

Sometimes you can get micro cramps which can give you grief. Micro cramps will not show up on an x-ray nor will they show up on an MRI scan. A visit to a McTimony chiropractor will help with this and also give a second opinion which your parents will find useful.

Lastly you need to get more sleep. Lack of required sleep will interfere with fine muscle control and this will drive up pain and discomfort.

Hope this helps.

[erincath in reply to johnsmith]

Thanks so much!! I'll definitely have a look at all this and try the sleep thing haha x

[yayaquez]

I wish I had some insight on your actual condition or could give you some sort of advice on that, but I can't. What I can say is that I've also been in non-stop pain and discomfort since around March and I feel you on that front. Especially with our age (I'm 17,) I feel like people tend to overlook the degree of suffering these chronic conditions can and are causing. I have a specific kind of migraine, and haven't had a day without it and the symptoms that go along with it for months now and frankly I'm just tired and can't remember what it's like/how productive it must be to actually feel healthy!. It took about 4 months (and a ton of tests) for a diagnosis but even now, a treatment plan isn't clear. Hopefully when you figure out what it is that's going on with you, it can be fixed!

idk, i guess i just want to say that it's so easy to feel alone when you have this (invisible) pain that nobody really understands fully and, even if they try, you know they couldn't imagine what it's like and if you want to talk, feel free to add/message me.

Also don't ignore the connection between your physical and mental health here! Being in pain for so long, especially with no helpful answers or solutions is frustrating and can be emotionally debilitating. Bouts of depression and/or anxiety are common with chronic illnesses because of this but often go unnoticed because they're overshadowed by the physical. It's okay not to feel okay right now, this is a very hard thing to be dealing with, especially with school and everything else going on.

Best of luck with everything

X

Maya

[Hidden]

I'm so sorry you are going through this. Have the doctors ruled out ehlers danlos hypermobility syndrome ? It does not show on scans etc. Please give it a google and see if you recognise yourself in the symptoms. Wishing you all the best on this journey. Take care