Undiagnosed chronic pain

[CaSRobbins]

Hi all my names Chloe and I'm new here and was wondering if anyone had any tips on coping with undiagnosed chronic pain. When I was younger (primary school age) I started to develop pretty much every symptom possible of Juvenile Idiopathic Arthritis I had the swellings, aching, everything in my knees and ankles. I was seen by a specialist that concluded that it wasn't possible that I had JIA as I didn't have the rheumatoid factor. They pretty much sent me away after that and I had physio to try and help for a couple of years but had no luck.

Shortly after though I broke the fusion of my heel which I was told would heal on its own. It eventually did but I'm now left walking on the outside of my foot on my toes pretty much, thanks to the fact I was born with my foot kinda lopsided. As you can imagine that is increasing my knee and ankle pain which I'm still suffering with and the pain in my foot is intense at times.

I'm in the process of trying to see a specialist again about my foot but as you can imagine COVID hasn't sped up the process and the pain is getting pretty bad. Has anyone had anything similar?

[Jjflash]

Hi there chloe,welcome.I think loads of people will know where you're coming from.Ive been to the medics and they've not been able to detect the problems in their scans.Like yourself,I had tremendous pain in my knees,shins and ankles.To this day,my knees and ankles remain a constant problem.Having seen different medics over the years,I just don't have the confidence in doctors.the scans/x-rays have been very inconsistent. I'm still in lots of pain daily but won't get checked out again unless critical.When you visit the specialists,the tests come back negative or inconclusive and they look at you like its all in your head.You could maybe try a pain clinic in your area,they might be able to understand your pain much better.I hope so chloe.i hope you get your pain into a much more manageable level.gd luck chloe.

[CaSRobbins in reply to Jjflash]

Hi, thanks for your reply. It’s good to know that there’s others out there just like me. I’ve started to lose faith in the doctors too as just like you every time I go everything comes back inconclusive and I just get sent away. Hopefully this time around that won’t happen but I’m not very hopeful.

[Jjflash in reply to CaSRobbins]

Please stay positive chloe,don't give up on the medics like me.dont know if you've looked at things like a tens machine.I know its pretty cheap so you'll have nothing to lose.Remember chloe,you're still very young,I really hope that you keep persevering.Get yourself better whatever it takes.All the very best in your quest.

[Sorohan in reply to Jjflash]

I agree try a tens machine it will relive pain while you are using itGood luck

[Boudica]

Cupping and ionic foot detox

[Imagine1]

I also have the same problems as you, I was left with no treatment having broken my foot, ankle. 15 Months later I am still having problems, I have seen a specialist of sorts 12 months after the accident I had at home falling downstairs. He said it looks as though I have Chronic Regional Pain Syndrome which is very hard to diagnose. This is not good enough for me, I have had to leave my job which I loved because I had been wearing a boot and I also have a limp. The glorious NHS have ruined my foot not giving me the correct care and have left me disabled. I don't know but if I was you I would try to get a diagnosis of Chronic Regional Pain Syndrome, it might just help and you might get the correct treatment. Tell me how you get on. I hope this helps.

[CaSRobbins in reply to Imagine1]

Hi, thanks for the info. I’ve never heard of Chronic Regional Pain Syndrome before but it does sound a lot like what I’m going through. I’ve had tests to rule out arthritis and damage to my tendons so it could be very possible. I’ll definitely mention it to the specialist when I see them.

[Evonne02]

Hi Chloe, Like you I have undiagnosed chronic acute pain. Osteoarthritis has been diagnosed in my hands and base of my spine. Your other pains are very similar to mine. I got fed up with my old go and left. When I moved to my new Gp and gave him a list of my other chronic pains. I did admit that it was affecting my mental health and at times I felt suicidal due to the pain. In addition it was very difficult to admit that I struggle to look after myself. My fabulous gp immediately booked me for x-rays then referred me to The Pain Clinic. The x-rays showed nothing regarding my pains. I have had a telephone consultation and will speak to someone next month about my medication. I've weaned myself off Cocodamol which was hard but continue to take Gapapentin and Morphine. So far The Pain Clinic have asked me to join 2 groups for support. I will also have to attend a group Zoom meeting. I've also been told that I'm believed about my pain but it could take up to 2 years to get a diagnosis. I can call them anytime and this has made me feel more relaxed and supported. My new gp does care and looks after me. When I call they act on the issues I have immediately which makes me cry sometimes because it's a total contrast to my old gp. To be honest I feel like I don't deserve being treated and supported so well because my old gp did nothing but make me feel like I didn't deserve it. My old gp I found out was private and accepted NHS patients. My new Gp is NHS.. amazing the difference.

Please let us know how you get on. Good luck 😻

[Morathion]

Hi ChloeI can’t say I have anything similar in the specific area of the body however I do have severe chronic pain in my back that has been undiagnosed by a multitude of doctors and can also empathise with being young with chronic pain, as I am currently only 17 and have had the pain for a good few years. While it can be terrifying to know you have something people can’t seem to diagnose it’s important to remember the effect mood and stress have on pain, particularly chronic pain. For me this has meant that I typically resort to attempting to distract myself, for example lots of music and reading and watching tv, playing games and all that. It is often frequently difficult in social situations as it is rather tricky for people, particularly our age, to understand what it is like with chronic pain. Therefore it is very important to speak to close friends and family about it so they can try to understand what you’re going through. Another difficulty is in terms of medication as doctors are typically much more reluctant to prescribe strong medication to youngsters, however I’m afraid that there is relatively little that can be done about it, other than seeing if you can maybe bring a roommate or parent/guardian to testify as to how much pain you are in, but this is tricky. The most important thing to remember is that you are not alone and that as time goes along you will find more effective coping methods. Good luck mate!

[VELoce21]

Hi I am so sorry to hear about your situation. I once had a lovely GP who said don't just look at the results look at the person. I have a pain specialist who really understands pain. Please believe in yourself which I know is hard when other specialists don't. Take care