New to the group!

[Tryingtostaycalm]

Hi Karen44 welcome! Consider this: Being the age you are is kind of lucky for you in some ways as you have made it this far without the fibro diagnosis.
I have had fibro on and off for many many years and I am 59. You say you are active: My biggest advice to you is to stay as active as possible. Fibro slows us down yes, but if I stop being active completely I quickly worsen. So to me it is important to stand up a lot throughout the day and move around a bit even if I am not leaving the house. Do walk around; do light chores as you can do them and keep your muscles moving if possible.Even on my worse days I still enjoy cooking and light gardening. As for your diet I really am not sure. Sugar make me feel worse; so does gluten. Coffee I can not live without! I take it kind of easy and eat what my body craves. Do not be surprised if you are drawn to foods rich in magnesium as many of us with fibro have low magnesium levels. I find myself craving cashews a LOT!

 

[diamond]

Me too with the cashews! Great advice Tryingtostaycalm.

 

[Tipnatee N]

Nice to see fellow newyorker here great advise Trytostayclam ( love your name too) . I used to lived in brooklyn , gosh I miss it there.

 

[Tipnatee N]

Me too with the cashews! Great advice Tryingtostaycalm.

Oh wow. I didn't know cashews can be bad. How interesting. I know that broccoli and water chestnuts is terrible for me and so as some type of bread. Not all Gluten are bad for me , but low carbs is a must. I can't eat raw onion, or any peanuts ( peanut butter is ok for some unknown reason). I have to beware regular table salt and switch to mineral salt such as seasalt or pink salt instead. The saltless salt they selling which basically is the potassium salt which also great. I'm very sensitive to artifical sweetener , and can't eat too much refine sugar. I have to subtitude with agave nectar or real honey. And no pineapple for me , no long resturant tomatoes sauces whatsoever. Once a while I'll eat resturant prepare food but not that often. So far that I know only rice and pears are very safe to eat for most food intolerance problem.

Still there are lots of the NO list popping up again and again. I have to do another 30 eliminating diet again soon.

 

[Karen44]

Hi again,
Prior to being diagnosed presently I started this year with sinus issues and a cough I had sinus surgery but it did not help. Next symptom was double vision (both eyes), then fatigue, muscle weakness, terrible pain in back of neck and shoulders. I know I have peripheral neuropathy which can cause pain, burning and pins and needles. Now I have pain around me shoulder blades, elbows, upper arms and back. Sound familiar to anyone??

 

[Tipnatee N]

Hi again,
Prior to being diagnosed presently I started this year with sinus issues and a cough I had sinus surgery but it did not help. Next symptom was double vision (both eyes), then fatigue, muscle weakness, terrible pain in back of neck and shoulders. I know I have peripheral neuropathy which can cause pain, burning and pins and needles. Now I have pain around me shoulder blades, elbows, upper arms and back. Sound familiar to anyone??

I think you meant EVERYONE here , yes . that's me with my both hands raising , guilty as charge :sad: I'm having those pain right now as I'm typing these words.

 

[chblack]

Yes! I have the burning and tingling, too. Also, the pain in my shoulders, neck, and back. It hurts to walk sometimes, and if I am standing for a long time, I hurt. My doc put me on the gabapentin and it really has helped. I take it at night and I sleep so much better and it is nice not to wake up in pain. During the day, I take Celebrex with Tylenol. I am on a plant based diet but despite what I eat or don’t eat, diet has not had any effect on my fibro.

 

[Karen44]

Thank you for sharing. I take 1 gabapentin in the morning, also. It helps me get moving a little better. I am on a glut in free, caffeine free, milk free, sugar free diet. My memory seems to be a little better and my concentration. Also, the congestion in my head and cough are a little better. I've only been on this diet for about 9 days. So, I will see how it goes. No change yet in pain or fatigue.

 

[Haen]

I registered a couple of weeks ago and should have introduced myself. I was diagnosed with FMS in 2005 and in 2015 after seeing a pain specialist for the umpteenth time was finally put on my medical notes because unbeknown to me at the time the consultant fault to put this on my notes for 10 years. Since 2015, my FMS has increased and now it’s Chronic FMS and the pain has increased dramatically but it’s something I need to evolve and adapt and be stronger as I did when I was first diagnosed. The only difference now is I’m 12 years older than I was when I was first diagnosed and that does have a big impact.

I was born with a condition called Spondylolisthesis of the spine which is severe to moderate arthritis to left and right of Lumbar 5, I was told when I was 17 that when you get to 30 it will start getting worse and more painful. Not was those consultants bang on. Now I’m nearly 40 in January 2018, the pain us worse than it was when I was younger. But I prepared myself in body, mind and sole and evolved and changed my life style. The problem with Spondylolisthesis it is right on top of two Fibro Points so the pain is intensified. As the consultant put in my medical notes. It’s like a battlefield of pain. On one side you have the Spondylolisthesis on the other side you have the FMS and they are at war with each other. But I leaned to live with this condition as I found with the FMS. As a Male with FMS and being one with an unbelievably strong willpower I told myself never give into your back pain and the same for my FMS. There are days were I’ve just got no energy but I push myself through the day. And keep telling myself as Neo said in the Matrix. "There is no Spoon" and I do the same for... "There is no pain". It’s mind over matter... convincing your brain to ignore the pain and concentrate on something else instead it does work.

There are skeptics who don’t believe in mind over matter, and that you cannot tell you brain to shut off the pain. It’s not BS and it is true because I do it all the time. Set yourself daily goals and/or tasks to do. After 12 years with FMS I can tell you now the worst thing that you can do is laying down because it makes your FMS worse. I am tired all the tine because with my FMS I have really bad fatigue and no two people have the same symptoms as well.

So get yourself out of bed go for a walk work those muscles. Okay the walk will take as twice as long as is should do because with FMS everything seams to be in slow motion. I get days were I feel as though my legs are encased in concrete. I feel sometimes like my legs are so heavy I’m walking in water. I recall telling my doctor this I felt like I’m walking in water and he looked at me as though I was nuts.

The problem with yes patients with FMS is we look a picture if health and there is nothing wrong with us and I’m fed up with academics trying to make a name for themselves in the academic world if medical science journals that Fibromyalgia doesn’t exist and it’s in a delusional psychological condition that is all in our minds and there is nothing wrong with us. Tell that to the millions of people who have this disease... because specialist still don’t fully understand why so many people have FMSvand there is no none cure and no explanation. Academics say it isn’t real and we are making something out of nothing. To those people what I really want to say would only get me banned so I’ll just say... Bleep, Bleep, Bleep, Bleep and you can draw your own conclusions.

Back when I was first diagnosed it was one estate Doctor that seen something in me and without warning pushed here and there and said to me. I think you have what us called a rare condition called Fibromyalgia. Which back then in men FMS was very rare indeed and unheard of. And Doctors were to arrogant yo understand FMS and too pigheaded to do the research or they just didn’t want to know and waste their time. I think all patients with FMS should be prescribed with Tramadol but Doctors in England and Wales have stopped prescribing these because they are a narcotic and adtictve. Which really grinds my gears because a drug is only addictive when you allow it to take over your life. And all painkillers are a narcotic and additive. You can be addictive to caffeine and drink loads off coffee. But it’s the willpower which stops you... you have to tell yous4lf to give in. I stopped taking my Nortriptyline 8 months ago and it was the best move I ever made. I never got a proper nights sleep. It gave me horrendous nightmares and ever since I stopped taking them I’ve slept better than I have done in 7 years that I was taking these meds.

 

[diamond]

Welcome Haen....i think your right...best to keep moving when ever possible.

Sometimes though it really is impossible .....the pain in my legs and knees and feet is often so bad it takes every ounce of strength to walk around my house and limping too because my knees seize up the more i push....like they will snap ..if i don't stop its screaming pain that builds and builds and i can no longer put weight through them.

Its the same pain as when i broke my foot and was in plaster. I'm not sure if other people experience fibro pain at that level regularly?

I have tramadol at the moment ...maybe that is going to be withdrawn soon as I am in the UK.

LOL my pitiful walking takes 5 or even 10 times longer than my previous leisurely walking pace. It definitely feels like someone poured concrete into me too.

Nice to have a man contributing on the forum.