Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Hi

Feb 05, 2017 9:22 PM

I'm Beth, I'm 17 soon to be 18 which is when I'm finally allowed treatment. I got this app because I spend a lot of time researching what I have and trying to understand it and work out how to keep up with my college work and get to sleep but I cant. This is sort of a last resort I guess. I'm here to message or rant to if you need it I am deeply sympathetic with all of you, I hope you're all doing as well as you can ☺

Feb 06, 2017 1:57 AM

Hi Beth, welcome to the community. We all have chronic pain in some forms. I have fibromyalgia. We come from all over the world so we are on here different times. Could you tell us a little about yourself? What kind of pain do you have? We would love to get to know you.

Feb 06, 2017 6:49 AM

Hi Beth, welcome to the crazy family 😉 we all support each other here and there's no judgment, we're all here because we suffer with chronic pain in one form or another and no subject is taboo as pain affects every part of our lives. we all live across the globe so people will be on at different times, if you don't get a response right away give it a few hours and someone will be on to respond.
I'm battling Trigeminal Neuralgia, anxiety, depression, PTSD and I've just been referred to rhaumatology to find out if I have fibro or something else.
What's your battle with?
I'm sorry if I'm being rude but why have your Dr's left you with no treatment until you're 18? Surely the NHS were able to help you in some way? I know the NHS service isn't the greatest but they can't leave you with nothing.
When I was first dx it took a while to find the right combination of meds to bring the pain under control as best they could.
Hopefully you'll find the right combination as quickly as possible to bring your symptoms under control then you can move forward with your life the best way you can xx

Feb 06, 2017 8:43 AM

I have fibromyalgia chronic pain and chronic fatigue, they've left it till now because apparently all the therapy is adult based me and my mum have tried to push for help but they just said 'rules are rules' I don't know if it might be because they'd be referring me for paedoatric therapy to then have to refer me again when I was 18 so it was adult based but I've had it since I was 13 and we only just got a diagnosis at the end of last year. I'm currently looking for ways of dealing with it as I'm behind on college work and struggling to keep my grades up to university standards and I thought that this app could help me find things to try. Thanks for such a warm welcome ☺ xx

Feb 06, 2017 8:53 AM

Have you tried heat? Heating pad or electric blanket. Try soaking in hot tub with 1-2 cups or more of Epsom salt. There are supplement you can take. Magnesium, vitamin B complex, vitamin D, fish oil. Those are a few things

Feb 06, 2017 9:06 AM

The NHS is ridiculous, I've been told by my daughters Pediatric Diabetic Team that when she turns 16 she'll be moved to the adult clinic! She's only 10 now so it's a way off still but one rule for one and another rule for another!

Feb 06, 2017 9:19 AM

I use heated beanbags at the moment but I'll definitely try vitamins! & I know they should just have set rules and routine with people by the time they've referred me anyway I'd be eighteen haha

Feb 06, 2017 10:28 AM

As Animallover2 said these help....
Magnesium supplements help with relaxing muscles, helps nerve pain and can help fights fatigue.
Vitamin D....the sunshine vitamin....helps with the process of obsorbing other vitamins and minerals like calcium and iron.
Vitamin B complex helps fight fatigue.
Iron also helps fight fatigue especially if your iron levels are on the low side....I'm borderline anemic!
Relaxing in a warm/hot tub for a minimum with 1-2 cups of Epsom bath salts helps relax your tired and aching muscles which helps to decrease your pain levels.
Try doing light stretches to help keep your muscles strong and able to support you....as the saying goes use it or lose it! And trust me that is a very true saying, your much better off doing daily stretches and maybe take up a yoga class or swimming regularly as well because it's easier to keep yourself moving rather than having to go thro painful PT to get the muscles moving again!
A heat pad or electric blanket are good for pain as well

Feb 12, 2017 2:45 AM

Dear Beth. I am so sorry that you had to wait for help. I had paediatric fibromyalgia from when I was nine but was misdiagnosed with "school refusal". It was only when I was 18 that I sought help for myself. University was hard, but I learned to be kind to myself and to ask my lecturers (through the department head) for special consideration incase my work was late. I was doing a communication course but had lost large chunks of my vocabulary through fibrofog.
I am so glad you are doing the research. Keep at it and believe in yourself. You can overcome😊!

Feb 12, 2017 2:53 AM

What treatment options are you considering? Animal lover and Sezzy have some useful suggestions for drug-free pain management. I particularly like the vit b suggestion as that has been very helpful.

Also try searching for the book "what your doctor might NOT tell you about Fibromyalgia." This really helped me. No pressure though. It took me 8 years to decide to try some of the treatment suggestions in the book. His protocol is not for the faint of heart, but it has really helped.

Feb 12, 2017 3:01 AM

When I was younger they disregarded me as just not wanting to go to school until I've gone back to them again in the last year like I need help but at the moment I'm struggling to convince my college that I'm actually ill I just feel like I've spent my time having it trying to prove it rather than getting it dealt with I'm hoping university are going to be more understanding

Feb 12, 2017 3:12 AM

I've tried the vitamins over the last week and I've noticed I'm a lot less tired and other than that just heat I tried bath salts and it didn't seem to help but I feel that was fault of my own as I often had to do things after that usually tire me out like walking my dog so I'm hoping to try them again. I'll have to let my mum know and we can look into it she's constantly trying to find out as much as she can about fibromyalgia and so am I so that should be really useful thank you ☺

Feb 12, 2017 3:20 AM

You are really fortunate to have support in your mum.

Feb 12, 2017 3:20 AM

With the Epsom bath salts you need to soak in them for at least 20 minutes to feel the benefit and also not to do anything for 2 hours after as they can make you sleepy but also you need to rest your body....doing stuff straight after like walking your dog is going to negate any good from them. Sorry I only just realised I hadn't put that in my last post!!! Got to love the fogginess 😨😨😨

Feb 12, 2017 3:24 AM

True Sezzy. I used to use salts just before bed to help relax and sleep. I use regular salt from my kitchen though

Feb 12, 2017 3:40 AM

Beth, having an official diagnosis and medical records does help with school. The key is to find an administrator who can have your back. Or maybe your school has a disability office that can support you?On top of that, let your lecturers know upfront at that you have a challenge before the assignment is late. That way it doesn't sound like an excuse afterwards.
I know how bad it can feel when you are constantly having to prove that you are sick and to fight for your rest
and consideration. Over the years, I have learned that people may not believe you at first, but if you believe yourself, they get on board eventually.

For your treatment, I recommend seeing a fibromyalgia specialist because many doctors still think of fibromyalgia as a wastebasket diagnosis. The last thing you need is a doctor who doesn't believe you.

I cannot stress this enough-- be kind to yourself!

Feb 12, 2017 3:41 AM

Normal kitchen is very refined and not the natural salt our bodies need but Epsom bath salts is magnesium which helps our bodies and it leaves my skin soft also dead sea salts which are very good for skin conditions and even Hymala

Feb 12, 2017 3:43 AM

Sorry posted by accident...
Himilayain salts contain a lot of minerals our bodies need

Feb 12, 2017 3:45 AM

Thanks. Will look for some. Although they are hard to find here in Africa

Feb 12, 2017 3:52 AM

Even dead sea salts or Himilayain salts would be good if they're easier to get?
Or any natural salt that's not been refined?
Normal table salt is basically sodium chloride with an anticlumping agent which is normally an aluminium based agent (which goes straight to the brain and has been found to aid dementia)

Feb 12, 2017 3:55 AM

How about Radix bath salts and bath soaks. Those are easy to get here. They have sea minerals and herbal remedies infused.

Feb 12, 2017 3:59 AM

Yes radox bath salts are good, they smell nice as well. I haven't used them in ages
My autocorrect wanted to change radox to radon!!!! Gotta love autocorrect 😨

Feb 12, 2017 9:11 AM

Beth, I fully appreciate your problems. My son has health issues in winter that have resulted in missing considerable chunks of school. As a result, we always think his exam results are not indicative of his abilities despite seeming respectable.

I was listening to a podcast that indicated there are specialist paediatricians who have an interest in chronic fatigue. I wonder whether you can get a consult with someone like this.

There are problems with prescribing medications as some are not tested among people under 18 and hence are not licensed for prescribing to those who are younger. Prescribing a medication for off license use is not allowed except when permission is granted for a clinical trial, and doing so leads to loss of the medical license. Sorry that you feel trapped by this regulation which was intended to protect people.

Sounds like you are doing well though. Remember to celebrate your victories!

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