23 year old female..new to forum..any fibromyalgia advice?

Hi I'm 23 years old and looking for some advice.
Health deteriorated shortly after turning 20- had numerous infections lasting over a year (resistant to any form of treatment), chest/cardiac problems and struggled with chronic fatigue (sleeping 20 hours per day) and muscle/joint pain/weakness. Back and forth from hospital and under investigation with chest consultant, cardiologist, ENT and rheumatologist as a result of ill health I spent a prolonged time in bed and was house bound for approx 2 years. After numerous investigations it was discovered that I was severely deficient in vitamin D ( the cause for the multiple infections, as immune system was so weakened and believed that deficiency had been undetected for a number of years) I had a DEXA SCAN performed which showed severe osteopenia and was diagnosed with fibromyalgia. ( I also suffer from asthma and sinus tachycardia) I under went physiotherapy for over a year to regain strength and gradual exercise therapy.
At this stage I am still quite weakened and struggle to do much with the pain and fatigue...wondering if anyone else my age, has had any similar problems and could offer any advice on how to increase fitness whilst managing pain and fatigue?

Hi, JenJen, and welcome! I'm so sorry you went through so much. It's amazing what deficiencies in vitamins can do! Many have a vitamin D deficiency...even healthy people...because we use sunscreen to protect our skin when in the sun. I live in Florida and still had a vitamin D deficiency. I take 5,500 IU of D3 daily.

Another nutrient that can cause pain and muscle cramping is magnesium if you are lacking in it. There are several varieties of magnesium but I take magnesium malate because it has malic acid in it and it's also one of the easiest magnesiums to be absorbed. Studies have shown that malic acid at certain levels does help with fibro pain in some people. It has helped me quite a bit.

I also walk and/or swim as a daily gentle exercise. Walking is wonderful and you can build up gradually, too. I had to do that. But now I walk 30 minutes a day and it gives me more energy and less pain.

If you sit or lay too much with fibro you will be stiff as a board and have more pain. Also, for me, if I sleep too long I will be more tired! I have myself on a sleep schedule and go to bed and get up at the same time every day. I used to set an alarm but now I automatically wake up. My body is accustomed to this. I try to get 7-8 hours of sleep a night and that works best for me.

Be sure to read Fibro 101...the first thread on the forum. There are good links about fibro and you will learn a lot there. There are links about Vitamin D3 and also magnesium malate and how these work in your body. All the links are good so do read them. We have to be our own advocates with this illness so it's good to arm ourselves with knowledge.

I'm looking g forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to heat more from you soon.

Sherrine

Thanks for the replies it's greatly appreciated..I seem to over do it or not do enough. I have slowly been increasing my walking over the past few months, my problem is more the aftermath, I may feel fine at the time, but then can be in bed for days after. I'm currently on 4000IU D3 and 2000 mg calcium and my levels have dropped again to 10, still not entirely sure why they keep dropping. It is amazing to think that something as simple as a deficiency in a vitamin can cause so many problems, when I was going through all the investigations the last thing I thought was that I may have been deficient in vitamin D, when I seen the consultant he had explained that there appears to be a link between low vitamin D and fibromyalgia. My main concern is that the osteopenia will develop into osteoporosis. I had to leave work and university as a result of everything, I'm just hoping at some stage I can manage the symptoms and get back to some form of employment and finish my degree. It has been difficult as a lot of friends and family do not fully understand, so it's great to find a lot of people, with similar stories! When I have been researching both osteopenia and fibromyalgia, there is very little advice for my age group. I have been reading through a lot of the threads and have gained so much information already! :)

JenJen, I know this is off topic but I just wanted you to have this info. I have osteoporosis and use the program called Save Our Bones. You can find info about this on the Internet. You try to keep your body more alkaline and this, along with gentle stretching and exercises, has helped many increase bone density.

Certain things help with bone remodeling, along with certain vitamins. I chose to go this route because I don't want to take the medications they are giving women for osteoporosis. Many have reversed their osteoporosis in the Save Our Bones program and, since you have osteopenia, you might be able to gain the density that you have lost. Vitamin D3, calcium, magnesium, and vitamin K2 are important.

As I said, you can check this out on the Internet and see if this is something you want to try. If you have questions, don't hesitate to email me.

Sherrine

Jen, we can't be carrying on a discussion of osteoporosis since this is a fibromyalgia forum. That's why I suggested you email me and I can answer your questions that way.

At the left of this post, under my name, you will see an envelope. Click on that and it sets you up to email me. I hope you understand. It's too easy to get off topic. Thanks in advance for understanding.

Sherrine