Is it fibromyalgia?

Hi Miraculous and welcome! I have fibromyalgia and I have a daughter who has the very same symptoms as you. After a lot of doctor's appointments she was diagnosed with Reflex Neurovascular Distrophy (RND). It is like fibromyalgia in children and is an amplified pain problem that has to do with your nerves somehow misfiring the wrong information in your body. I posted a bunch of info on a thread below you need to read. The thread is the one about the seventeen year old girl. This has been very difficult for my daughter and I have a passion for helping teens to find out about this diagnosis because a lot of doctors don't know about this yet. Please read my postings and if you have any questions feel free to ask me. Getting the diagnosis and treatment has saved my daughter's life from one of sheer misery! I do not know that you have this, but your symptoms fit the criteria and are just like my daughters.

Hmmm, I can't seem to get the link to work. Try googling RND parent handout.

I found it! I have been trying to find this information since way back when my daughter was first diagnosed in the fall. There is a website that is : stopchildhoodpain.org. It is really great and explains things well by Dr. Sherry (the leading doctor in AMPS). You can see the fibromyalgia section at the top and the CRPS section next to it (another name for RND). They are basically the same thing and it explains them very well.

Ashaline has the most experience in this area and it sounds like a good fit for you. Once you read through it, perhaps you could check to see similar programs in the UK? I m really excited about it even though I'm past the age limit they work with. My daughter might have something similar and its nice to know there are options.

I would also recommend reading through the Fibro 101 thread at the beginning of this forum. It has a lot of information. Take it in short doses (I had to .... kept forgetting, lol) and it will give you everything you ever wanted to know.

A couple of suggestions for easy things to help yourself in the meantime:

Are you taking any supplements? The standard ones for Fibro are D, Magnesium Malate, and D-Ribose. These can help minimize the pain a bit and give you more energy and concentration. My daughter had mono last year and it affected her cognitively even after she was supposed to be better. We added the above and Vitamin C and it helped her tremendously. The vitamin C has a lot of properties that I didn't realize and some of them have to do with cognitive function. These are all easy to get at the local drugstore or ordered off of Amazon and may help tremendously. I know they assisted me.

I'm working to take an exam for certification, and have been having a horrible time, so I have added some others. I can't think of them right now, but will post later when I remember.

The other thing I would recommend is to either get a notebook or an app for your phone to help you. Write down everything you are feeling and going through and everything you take as you do it. This will help you with the Dr visits. There is also a free app for Android phones called multi-time free. It will help with deadlines and things that slide out of your brain. You can set a timer for everything. I use several at once so I remember - even things like .... blow out the candle ..... pick up my daughter ... change laundry. Writing things down is the only way for us. I use MS One Note for everything, but there are several things out there for all platforms of electronics. Some people prefer notebooks because the act of writing things down helps cement them in our memory more clearly.

Last .... about Doctors. There are good ones and there are bad ones. Your GP is doing right by you to suggest bloodwork. There are a lot of conditions that are similar to Fibro. The standard diagnostic is to check tender points and then take blood tests to prove it isn't anything else. There are no solid tests for Fibro. Once they run the blood tests they can validate whether it is Fibro or something else and Fibro (some of us have that). It makes a different in what they can give you to help you feel better.

My RA basically looked at me across a crowded room, told me I had Fibro and scooted me out the door telling me I should be working with someone else for my meds. I had been sent there for an Arthritis review which remains untreated 5 months later. There are great RAs out there. Ask your GP (impressed that they asked about the tests) what they would recommend you do next. If you are comfortable with them and they can help you, its nice to have an insider helping you navigate the medical world. Your GP might be able to help you get into a program similar to what Ashaline listed in the UK.

A chiropractor is not supposed to diagnose Fibro. They base everything on the spine. They can give you their best guess, but they don't know. On the other hand, scoliosis is in their area and it might be worth checking out.

I know this is horribly confusing and can be overwhelming. One recommendation .... work through it a step at a time. Also, remember that everything above that I said (like each of us here) is based on my experience. I'm not a doc. But whatever you come up with, someone here has dealt with and is usually willing to give some advice or opinions.

Take care of yourself and good luck.