22, in constant, non stop pain but apparently I'm too young

tillyroo

Hiya, I'm new here

This is a repost, I originally posted on the forum for younger people but have been advised that some people here may have some answers

I'll try to keep it short and sweet! I'm nearly 23 years old, I have been type 1 diabetic for over 10 years and was extremely poorly controlled for 8 of them which resulted in a lot of damage throughout my body. In short, I've got the body of an old lady, I display diabetic complications you'd expect to see in someone in their 60's and up...

For the last year however, I've had moderate shoulder pain, mostly in my left. It would maybe flare up once or twice a week, and the bones would feel 'crunchy' and the general area very sore and tender. I went to the doctors, she examined me and said she thought it was just knots in my muscles and that sports massage would help, I went a couple of times once a week and it would soothe it a little but half an hour the pain was back. It slowly got worse; I found that if I was to say, suddenly throw my arms in the air, or reach up for something quickly, I'd have a ripping sensation surge from my shoulder through to my forearm. This pain would persist for about a minute during which I was literally speechless. This happened maybe once every other day. I went back to the doctors, was referred to physio and told I had shoulder instability. At first he thought I had hypermobility but said he thought it was more likely to be shoulder instability, insisting I had injured it. I have never injured my shoulder, not once.

I tried to persist with the physio but couldn't, I had exams at uni and the pain that came after physio was too much to deal with. I left it for a bit whilst I was busy, but maybe two weeks ago, everything changed. Whilst my shoulder has, for the past year, crunched/caught/popped, it got ten times worse. Varying from day to day, my shoulder will sound like there is gravel inside, will pop, catch, if somebody puts their hand to it they will feel it grind/crunch, and I can literally feel the bones rub together. The pain is debilitating. I've been taking tramadol, and I am incapable of doing anything when I have to take it. I don't sleep properly, I wake up every other hour in pain. It's also worse at night; a dull ache pain and sometimes a grinding, gnawing pain, sometimes sharp.

So I booked a doctors appointment and went yesterday. I thought, right this has to stop now, they have to figure out what this is, it's been a year! The doctor I saw was a new, junior doctor. I told him what's been happening, he wrote it all down. Then before he had even examined me, he told me I was much too young for osteoarthritis, and it was very unlikely that that what was happening. He asked me if I'd tried paracetamol! I said, yes, but 100mg tramadol hardly touches the pain, so you can imagine how helpful paracetamol is. He asked me to raise my arms above my head (which I can't do) and then tried to force them, which caused the ripping pain. He asked me to put my arms behind my back (which I can't do myself) and then he forced that too; more ripping pain. He asked me to sit back down but I asked him to feel the joints, and he agreed that there was definitely a grinding, popping sound.

I sat down and he asked me what I wanted to do.. I was baffled. I said maybe an Xray? And he said yes it might help. He went to get the advice of a senior doctor and she said to send me for an X-ray but that it probably wasn't OA. I felt like he must have thought I wanted it to be OA, which I don't of course, but I do believe that diagnosis gives you power. Once I know what I'm dealing with I can act on it. I felt so belittled, I wanted to cry... the last two weeks have been a blur of nothing except pain and depression, yesterday was the first time I'd left the house in 2 weeks. I can't cope with this unbearable pain and he's just sat there asking me if I've tried paracetamol and that I'm too young for arthritis.

Have any of you had difficulty getting a diagnosis, because of your age? How were you diagnosed, with OA? What should I do next? I go back to uni in 5 weeks and as it is I am completely dependent on tramadol, I'm choosing between being 'with it' and being in pain. Thanks for reading, and sorry for warbling on!

bubbadog

If your not happy with the doctor you saw could you get a second opinion from another doctor in the practice? You are entitled to do that. You really need to get a G.P on side with you to get the tests done to diagnose the problem you have. I hope the x-ray may show something up though I think an MRI scan would be much better. Keep us informed and I hope this may help you get somewhere.

DebbieT

Hi,

I'm so sorry uve been left to suffer without any imaging being done b4 now

I was diagnosed with OA & PsA (Psoriatic Arthritis) at 37 by my rheumatologist. I'd had a swollen ankle for a month so was referred to a Rheumatologist by my GP.

Regarding ure tramadol use ... Is that normal tramadol ure on & how many times a day do you take it? I only ask as it seems it's 'spacing' you out. I think it might be worth ure while switching to slow release tramadol, it has far less side effects for most people & you'd only need to take it twice a day!! It could be a much better med with uni looming!! Something worth talking over with ure GP anyway.

Hopefully the xray will show something up regarding ure shoulder but be prepared that it may not ... Some pain conditions don't show on any images :?

I think uve done the right thing in posting here ... If nothing else having a good rant helps

(((hugs))) xxx

buffycat

hi....

i had issues in getting my diagnosis.....i first went to the doctor when i was 23....no-one listened though, and when they looked at my feet (which is where my RA started), their comment was 'they look fine to me'.

it finally took a house move, change of GP, and an hurrendous flare-up on the day for a GP to listen to me....but by then i was 26 and the damage to my toes by then had already been done (they're now a twisted mess). I will always be grateful to that GP (though i never caught her name) - she was a young locum.

all i can say is that you need to keep going.....ask for things like ESR tests, rheumatoid factor blood-test and x-rays.

and i wish you all the luck as well.....get something other than paracetamol too......it doesn't touch my pain!

x

chookgate

I'm nowhere near as young as you, and I don't think I have as many physical issues either, so I can't offer a lot more than a whole load of sympathy.

My experience though is that GP's (and maybe I'm generalising a bit) don't really think of OA as being much of a problem and also don't think there's much that can be done. They really just don't seem to get how debilitating it is. When I first started having problems I got referred to a rheumatologist, and all he said was it's not RA, it's probably OA! It took a lot of persistence to get the GP to even send me for an x-ray, which showed OA beyond a doubt, then he point blank refused to refer me to a consultant because I was only 52! As for being too young at 22 for it to be OA, they're mistaken, OA is often seen as just wear and tear which obviously increases with age, but I've come across (some on this forum) plenty of youngsters that have suffered - they probably meant your young age means it would be a lot of bother for them to sort out treatment.

So as well as the sympathy I'm feeling for you, and the frustration that the way the NHS treated me wasn't just a one off, all I can suggest is persist - keep going back, keep telling them it still hurts, the painkillers still don't help etc etc. Oh, and don't forget to ask for something like lanzoparole to protect your stomach from the pain killers.

Good luck, and I really hope your symptoms go away, or at least lessen.

trepolpen

there is several checks your GP can do like blood test for inflammation markers (CRP & ESR) & for Rheumatiod Factor in which 80% of people with RA will show up positive & arrange x-rays on your shoulder & maybe get a referal to a Rheumatoligist & maybe some physio

dont worry about making a fuss , you got enough to put up with

L1985

Hi hun

I'm sorry to hear your having so many problems with your gp. I had a similar problem I strarted with joint pain just before I fell preg with my 2nd child. This joint pain was blamed on pregnancy, thyroid issues etc etc a gp at 6weeks check after soon looked at my hands squeezed them and said its not arthritis. I refuse to see her now.

Keep mentioning it to everyone, mention it to who you see re your dibeates anyone. I have had loads of appointments with doctors and told them it took 18months before someone would run some bloods. Then all of a sudden I was refered to rhuemy and after 4years I have been told I have lupus.

Unfortunately your not too young I was 24 when my joint pain started.

I hope you manage to find a gp who will listen and take u seriously
Good luck
Xxxx

tillyroo

Thank you so miuch to all of you for your supportive and helpful advice! I had my xray done today and was told it'll be with the GP in a couple of days. I'm guessing nothing is going to show up, it always does... like when you go to the GP wheezing and coughing and sounding like a paper bag and you're told your chest is clear! So frustrating when you know something is wrong.

The pain has subsided over the last few days a little and I'm in a much better mood for it after being so depressed the last few weeks. Is this normal? Does OA flare up and then calm down, but with still mild to moderate pain in the background?

tillyroo

Thank you so miuch to all of you for your supportive and helpful advice! I had my xray done today and was told it'll be with the GP in a couple of days. I'm guessing nothing is going to show up, it always does... like when you go to the GP wheezing and coughing and sounding like a paper bag and you're told your chest is clear! So frustrating when you know something is wrong.

The pain has subsided over the last few days a little and I'm in a much better mood for it after being so depressed the last few weeks. Is this normal? Does OA flare up and then calm down, but with still mild to moderate pain in the background?

dreamdaisy

When my PsA arthritis flares I feel ill and tired but my OA 'flares' in a different way - the pain levels up for a few days and then return to their normal level of ouch. The pain is always there, grumbling away in the background. DD

barbara12

Hi tilly and a warm welcome from me
I am so glad some of the others have been able to offer advice...its rotten when you cant get your GP to take you seriously..like someone has said if you are not satisfied ask to see another GP or change doctors
I do wish you well and please let us know how you get on xx

justinbarrow

tillyroo wrote:

Hiya, I'm new here

Have any of you had difficulty getting a diagnosis, because of your age? How were you diagnosed,

I was like you when I was 17 - I was at college doing my city & guilds to be an electrician and had a part time job glass collecting in a working mans club.

I started to get gradual pain in my knees and ankles and thought it was due to being on my feet a lot while at college and doing the glass collecting job

I went to my GP several times about this as the anti-inflammatory tablets were prescribed not working he then decided to refer me to a specialist when their course of treatment was not working as each time I went I was gradually getting worse.There was a 6 month wait at that time to see a specialist and when I as told that they specialise in Arthritis even I said surely it cant be that to which they replied its unlikely but said it was the right thing to do by referring me.

Anyway it got worse and one morning I woke and I could not move and had to crawl to the bathroom all my joints hurt and were very swollen and I could not understand why, my parents called the doctor out and he rushed on my appointment to see the specialist who I saw just a week later.

When I first went to see the specialist as an outpatient they admitted into hospital on that same day and I was to be in hospital for 3 months and had lots of tests where they eventually diagnosed severe inflammatory arthritis which has remained with me ever since and now effects other areas.

I understand what you mean when you say your too young I was the same even in the hospital then and now people ask me what's wrong and when I mention Arthritis they say "gosh you seem young to have that"

I couldn't finish my course and had to pull out of college but sometimes think how things could of been if it wasn't for what happened.

I also think things could be a lot worse as there are others in a lot more worse situation than myself with things like terminal illnesses etc..

I hope things sort themselves out as Its not nice being in pain and having problems with bones during your younger years - Good luck