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I got diagnosed by a rheumatologists then I think I had 1 follow up appointment. Thats it! Does anyone think we should have doctors that can support us on our fibromyalgia journey especially as its so complex and there are so many symptoms! I learnt all I know about fibromyalgia online. I just don't feel like we get enough support or awareness! Does anyone have a fibromyalgia doctor??
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Members shared widespread frustration about the lack of ongoing fibromyalgia support after diagnosis, especially in the UK's NHS system where... Read more
@A MyFibroTeam Member I second that recommendation! I’m fortunate enough to be only about 2 hours away from the original Mayo Clinic location in Rochester, MN. They were the most helpful with non medication type treatments and information about how our body’s are working and why. My GP diagnosed me though, so I feel like she understands as well. My GYN is focusing on my menopausal symptoms, but I feel like she also listens to my fibromyalgia concerns and doesn’t dismiss them. My GP wanted me to see a neurologist, but I think there’s not much more to be done. I think she’s doing her best to try to get me help, but I’ve realized I’ve done pretty much all I can. I’ve reached the acceptance phase and now I just need to implement the things I’ve learned.
Same,I've seen mine twice then left to it.I totally agree there should be more follow up support .I think the UK is really behind with fibro .GPs need educating,but are also quick to put everything down to fibro when it suits .I'm lucky to have a neuro centre nearby that I self referred to and physios who act as a go betweens to get my GPs to sit up and listen 💜
@A MyFibroTeam Member I did learn some interesting information. I’m very much a research person so learning the “why” of this condition really helped me understand. The Mayo Clinic really focuses on non-medicine type treatments. I’ve been working on a lot of their suggestions since November and I believe that I have been feeling better. They talk a lot about positive thoughts and retraining your brain. It’s a work in progress.
I found one at Mayo Clinic. They actually have an area that specializes in fibromyalgia and CFS. I saw a doctor that does nothing else but focus on these conditions. There are, however, only 3 Mayo Clinic’s in the US.
It’s really not a particular program, though the Mayo Clinic has videos to watch and classes to take on Brain retraining. If you look online there are online courses on dealing with chronic pain. I also recommend the book “The Pain Management Workbook” by Rachel Zoffness, MS, PHD. This book helps to create a pain plan that works for you and has a lot of recommendations on how to manage your pain. What I learned from Mayo that helped me is the following:
1. The mechanisms of how the brain works when a person has fibromyalgia and why we feel what we feel. I’m an information and research person, so more information tends to help me.
2. Starting each day with a positive attitude is key. No matter how you feel that day, try to focus on the positive things you do feel. Even if it’s a difficult day, tell yourself that you’ve had days like this before and you have made it through.
3. Keep your brain busy on other tasks. If you sit around and think about your fibromyalgia symptoms, then that is all you feel.
4. Try not to rub or massage certain pain areas or wince when something hurts. This is a tough one for me. It’s hard not to do these things when you are sore.
5. Be kind to yourself. It’s OK to get tasks done, but don’t overdo. (I also have trouble with this.)
6. Get some exercise. It can be just stretching like yoga, or short walks. I discovered by trial and error that I can walk on land for about 20 minutes and in the water for about 45 minutes. It takes some trial and error to determine what works best for you. Some days stretching only, some days I can do some squats with light hand weights. Only you can determine what your body can tolerate.
7. Rest your brain as well as your body. I do a lot of meditation. There are apps for that. Even just going outside and sitting in a chair and breathing in the fresh air can help. I’m very faith filled, so I use a Bible Podcast as meditation some days.
8. Fuel your body with healthy, natural, whole foods. These will help reduce inflammation in your body. Foods that ramp up inflammation include refined sugar, red meat and any processed foods with chemical additives.
None of this helps overnight. It definitely requires some patience and does continue to be a work in progress. For me, it has helped immensely. This never goes away, but we can learn to function with it.
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