Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness


Aug 16, 2016 7:29 AM

Hi everyone. I haven't posted since I introduced myself but been reading.

Short(as short as I can make it) back story: I had someone hit my car side on in April 2015 and hurt my lower back. Didn't really realise straight away but stiffened up and became painful so went to a&e (I'm in uk) given painkillers and sent on my way.

I had some physio at a private clinic which helped with initial stiffness but pain continued. I've been back and forth to the doctor more times than I can count, sent to orthopaedics (saw a senior physio who did nothing), more physio on nhs, blood tests x2 only showed a vitamin d deficiency.

After 4 months of strong vitamin d and feeling worse than ever, pain spread to neck, knees and shoulders, daily headaches, fatigue so bad that I can't stay awake most days and move as fast as a 90 year old (I'm 30) the doctor finally sent me for an X-ray but would only do my neck because of amount of radiation. This was my first X-ray in my life.

After a 9 week wait my results are finally back and they show spondylitis. Doctor is going to refer me to a rheumatologist.

Does anyone have any experience with this? Any words of wisdom?

I hope everyone is doing ok!

Aug 16, 2016 5:00 PM

Hello Monday... ๐ŸŒน
Have u had an MRI? ๐Ÿค”Hopefully u will be seen soon and the consultant will order u one. ๐Ÿค”Dont give up... ๐Ÿค—Keep going back to ur gp if u have to...can u get referred to a pain clinic too๐Ÿ˜Š... they can really help u to cope with the pain with ๐Ÿค—different therapies/medications etc. ๐Ÿค”Its hard on the NHS ...took me ages to get help... i have a dx of scoliosithesis, ๐Ÿซosteo-arthritis, stenosis... DDD ๐ŸชCFS CPS ๐Ÿชoh... the list goes on... dont give up ๐Ÿค—

Aug 16, 2016 5:06 PM

๐ŸดSorry premature posting ๐Ÿช then lol...I hope u can get some help soon ๐Ÿค— its a fat shag ๐Ÿซhaving to wait for nhs ๐Ÿชappointments while they bicker over๐Ÿค” whose department has to treat u...๐Ÿ˜‰ but at least the pain team can help get the pain under control๐Ÿค— while u do some research ๐ŸŒน

Aug 16, 2016 5:12 PM

Thanks lulabel ๐Ÿ˜˜

No, no mri. Other than blood tests and this X-ray on my neck I've had no other investigations. Doctor wouldnt X-ray my lower back (mumbled something about high levels of radiation) it was only when the pain progressed to my neck he agreed to X-ray just my neck.

I'm hoping the referral to rheumatology will do the trick in getting me the right care. I think my doctor is sick of the sight of me now ๐Ÿ˜‚ it's been a fight to get this far. Wish I could afford to go private. I forgot to ask how long it would take to get an appointment. Hoping I don't have to wait too long but I'm getting used to long waits and not getting anywhere unless I moan constantly.

Aug 16, 2016 5:24 PM

Yes i feel u... i totally understand. Ive had all my spinal surgeries done private.๐Ÿ˜ถ..im now on a 2 year waiting list for a spinal chord stimulator on the NHS... (insurance was hubby's)... pain team is second to none... gp is excellent...๐Ÿค” but i have met some horrible consultants๐Ÿซ in my time.๐Ÿช I had one bloke struck off!๐Ÿด Lol pig! So dont give up... never give up... we are here for u! ๐Ÿ˜š

Aug 16, 2016 9:10 PM

Monday27th, I don't have spondylitis, but I have DDD, OA, and other issues with my spine. I'm under an orthopedic neurosurgeon, and a rheumy doc for sjogrens & fibromyalgia. I know there are others here with spondylitis though. Like me, most everyone isn't on every day, especially when dealing with stuff. Just be patient and hopefully you'll start getting helpful responses. Hugs love & prayers! ๐Ÿ™‚๐Ÿ’•๐Ÿ™๐ŸŒธ

Aug 17, 2016 2:28 AM

Thanks guys โค๏ธ๐Ÿ˜˜

My gp is nice but he kinda talks over me a bit, I have to really fight to get a word in and he doesn't really listen. Hoping he will now that something has shown up!

Felt a bit silly when I had no name for my pain, and when someone asks what's wrong and all I could say is 'I had a crash over a year ago and I'm still not right' people look at you like 'seriously?' Even more if they realise it wasn't a bad crash - I got up and walked away in one piece no ambulances no major dramas.

But that crash turned my life upside down. I'm about to start my final year of university after several years being a stay at home mo and I don't know how I'm going to cope getting a job when the year is up, or if I will even be able to do what I wanted to. My kids suffer because I'm always in pain and my husband is left with a smidge of the woman he married.

And it takes goodness knows how many trips to the doctor making a nuisance of myself before he will take me seriously! I'm just so frustrated. Half of me is thinking 'told you so!' And the other half is thinking 'oh crap'

Thanks for letting me vent. I don't really have people in real life who understand what I'm going through.

Sending big (gentle) hugs โค๏ธ๐Ÿ™๐Ÿผ๐Ÿ˜˜

Aug 17, 2016 2:30 AM

*stay at home mom, not a stay at home mo lol

Aug 17, 2016 2:51 AM

Hello sweetie ๐ŸŒน
It will get better as u learn to maximise ur coping skills ๐Ÿค—... positive mental attitude goes a long long๐Ÿ˜Š way... and i have 4 children, whom have all turned out ๐Ÿค— to be the most empathetic young people... ๐Ÿดwhich they learned because of my pain! Yea id rather they didnt have to... but they are all so perceptive, sympathetic, and can read the under lying pain ๐Ÿ˜ถ that i try to put on a brave face... it made them amazing people..๐Ÿ˜Š. 2 of which now work with mental health๐Ÿ˜š patients in the community... just as i used to...b4 i got sick! So dont feel u r impeeding them... ๐ŸŒนit is what it is hunni... they will adapt and love u always angel.๐Ÿค—
U now have a whole bunch of fabulous people๐Ÿช to talk to, vent, ask...and support u... and we all ๐Ÿดunderstand completely! ๐Ÿ˜˜Dont give up... u will find ur path ๐Ÿค—

Aug 17, 2016 4:44 AM

Thanks lulu โค๏ธ what amazing kids you have, you sound so proud! I guess I just feel a bit bad for my girls at the moment, they were used to having a mom who was always on the go, really independent, running round doing all sorts and now I'm always in pain and tired and at snails pace.

But with all that said I'm a fighter, always had to be, and I'll take whatever is thrown at me!

Aug 17, 2016 5:02 AM

ThanQ so much ๐Ÿ˜š
One day u will say the same about ur girls, im sure ๐Ÿค—

Aug 17, 2016 8:10 PM

Monday27th, I've had multiple auto accidents that I walked away from, then years gown the road has damage to my spine. They say illnesses hit us in our weakest areas, and my spine is definitely one of them. Try not to stress over what's months away, and just focus on the now, the today. One step at a time, one day at a time. Positivity is very helpful for me. Hugs love and prayers you can find ways to cope and obtain your goals! ๐Ÿ™‚๐Ÿ’•๐Ÿ™๐ŸŒธ

Aug 18, 2016 2:27 AM

That makes sense flappys, I injured my SI area years ago but recovered Ok and suffered back pain and pelvic girdle pain during my pregnancies which required a support belt to keep my hips in place so I guess my spine was probably weakened when I had my accident.

I didn't think about it like that until you mentioned, I just thought it was plain old back ache until now. I suppose because this time it hasn't gone away after a bit of rest/painkillers/hot bath!

Apparently I've got anything up to a 16 week wait to see a rheumy doc (good old nhs!) so first and foremost I have got to get to that. Good thing the kids keep me so busy!

I'm very much a 'worry about it when we cross that bridge' kind of person in every other sense, my husband is the opposite - plan every last detail and talk about it until we are sick of hearing it ๐Ÿ˜‚ i guess it's just the realisation that my future is gonna be a bit different than planned, it blind sided me a little even though I had been telling the doctor for 18 months that something was wrong. Funny how your emotions catch you like that isn't it.

Thanks for listening to me ramble, and for the love and support. Sending lots of gentle hugs ๐Ÿ˜˜๐Ÿ˜˜๐Ÿ˜˜

Aug 18, 2016 2:42 AM

Hi Monday...๐ŸŒท
Im really good at recording๐Ÿ“– all my๐Ÿ“š medical stuff (i have my file ๐Ÿ“Šwith๐Ÿ“ˆ๐Ÿ“‰ everything in it! ๐Ÿ“†๐Ÿ“Then i dont get pushed ๐Ÿ˜‘over by consults, ๐Ÿซwith confusion as i have ๐Ÿชevery letter cc to me also)๐Ÿ˜‰

๐Ÿ˜š The rest of my life ๐Ÿ˜„is utter KAOS! Lmao! ๐Ÿ˜›...I just wing it in style tho ๐Ÿ˜‰

Aug 18, 2016 2:56 AM

Lmao lulu love it! Wing it in style! I think sometimes that's all you can do ๐Ÿ˜ฌ๐Ÿ˜‚

My husband will say things like 'when I get paid in three months time, I'll make sure the bills and everythings paid for and then the extra I'm gonna spend on (insert random thing here) and the month after that....' and I'm just like let's get through today first and then we will work on tomorrow and so on ๐Ÿ™„

I don't listen/remember and he only has to remind me closer to the time anyway lol. My brain can't be doing with all that info at once๐Ÿ˜‚

Aug 18, 2016 3:16 AM

Im crap at appointments too! ๐ŸซGot one in an hour... ๐Ÿชand im still sat on my๐Ÿด fatass hehe... physio... trigger point massage... mmmmm ๐Ÿ˜Š๐Ÿ˜Š๐Ÿ˜Š
i only noticed i go today... cos of chatting with u sweetpea! Lol made me check my fone diary so thanQ ๐ŸŒท๐ŸŒท๐ŸŒท i gotta gooรฒoooooooo.......๐Ÿ˜‰๐Ÿ˜š๐Ÿค—

Aug 18, 2016 10:20 AM

Hope your appointment went well and didn't leave you too sore โค๏ธ๐Ÿ’๐Ÿ’†๐Ÿฝ

Aug 18, 2016 10:28 AM

I๐Ÿ˜š happened to be here..๐Ÿช. hehe... yes it was good! ๐ŸชHe hurt me good! Its a good kinda pain... ๐Ÿดim just sat here exhausted tho! ๐Ÿ˜Too much watching olimpics...Useng Bolt has wiped me out! ๐Ÿค—
How u doing chick-a-dee? ๐Ÿ”

Aug 18, 2016 10:47 AM

Physio leaves me worn out, wouldn't mind a nice massage tho!

We have watched loads of olympics, I've got the kids hooked dunno what we are gonna do with ourselves when it finishes. We will all be sitting here rocking ๐Ÿ˜‚

Aug 18, 2016 11:28 AM

I had the same when๐Ÿซ "Game of Thrones" & ๐Ÿด"Vikings" finished ๐Ÿ˜Š but i do have a bit of a beard fetish! Lol... i loved the dressage..๐Ÿด. and gymnastics... and ๐ŸŠ diving!
Im knacered ๐ŸŽ–on my couch holding all these medals! Proper day of it... i got 4 years to recover tho ๐Ÿด

Aug 18, 2016 12:27 PM

Lmao! Make sure you rest up plenty before preparation for Tokyo begins ๐Ÿ˜‰

If they were handing out medals for being exhausted, cranky and having no appetite I'd have spent the whole day singing the national anthem ๐Ÿ‡ฌ๐Ÿ‡ง๐ŸŽค๐Ÿ’ค๐Ÿ™ƒ

Aug 18, 2016 1:26 PM

Omg... ๐Ÿดhehehe....im taking gold for crying when im frustrated! โ˜”

Ready to start relieving your pain?

Join Community