New to the group!

Status
Not open for further replies.

Karen44

Active member
Joined
Oct 15, 2017
Messages
43
Reason
DX FIBRO
Diagnosis
10/2017
Country
US
State
washingtonUS
Good morning. I am new to the forum. I was recently told by my doctor that she thinks I might have fibromyalgia. This is after 4 years of trying to find an answerfor my many symptoms and seeing many specialists. I am older than most of you, 72. However, I have always been active until now. I do have pain, mostly nerve pain but muscle and joint pain, also, but not as bad as many of you. Fibro fog and fatigue are some of the most bothersome symptoms. I am taking Gabapenton and will start P.T. soon. Do many of you follow a fibro diet and, if so, has it helped? Thank you for listening.
 

Peaceandquiet

Active member
Joined
Apr 17, 2017
Messages
97
Reason
DX FIBRO
Diagnosis
04/2017
Country
AU
State
East
Hi Karen44,

Welcome to the forum. Yes, I think many of us try to eat a healthy diet but a specific fibro diet is just a suggestion that works for some but not others. It's definitely worth experimenting with what suits your body by eliminating some foods but be aware to watch your overall nutrition. Deleting sugar can't hurt though and many people have found that taking in more water is a simple step towards less pain. Personally, I find it difficult to give up nightshades (potatoes, tomatoes, chilli family) but had better results for my gut by going gluten free and it did help with pain for a while also. Reducing tomatoes helped me with arthritic pain. This is only my experience but let us know how you go.
 

Karen44

Active member
Joined
Oct 15, 2017
Messages
43
Reason
DX FIBRO
Diagnosis
10/2017
Country
US
State
washingtonUS
Thank you peaceandquiet. Right now I am trying to cut out sugar, wheat and caffeine. The caff is the hardest. Do you drink coffee?
 

Tipnatee N

Very helpful member
Joined
May 8, 2017
Messages
594
Reason
DX FIBRO
Diagnosis
11/2012
Country
us
State
New york
To me when it comes to diets and pains management/ fatigue , I listen to my body not my desire. I want cookies but my body said 'yikes no way that's gonna hurts' so I stop. Cause I know that's there will be a time when my body wants it again but at the moment it does't. It's kinda hard to explain but this things do take a bit time to learn for me. It mostly become clearer when lost my appetite, and after I studies up more and more about other healthy diets. I believe our body needs and wants will changing all the time.

I believe that if I surrounding my self with all the freshly good ingredients and good choices , then when I need something I can avoid making a bad one.

I often break down the components ingredients of each things I drink or eat. Like coffee is high acid so I'll drink it at the amount of my body needs. If too much acid and my stomch starting to hurt I'll add alkaline food to balance it.
 

Peaceandquiet

Active member
Joined
Apr 17, 2017
Messages
97
Reason
DX FIBRO
Diagnosis
04/2017
Country
AU
State
East
Hi Karen44

Yes, I have the occasional coffee if I'm out because it tastes so good but I'm a tea drinker at home.

If I'm on holidays I will drink one coffee every day. I cut back years ago to around 2 cups of tea per day and cut out the sugar. It was really hard at first because it had become a habit to boil the kettle and make a cuppa. Now if I feel like one I have a glass of water while I think about it and the desire usually goes away.

Don't be too harsh on yourself....just gently reduce and really enjoy it when you have one.
 

Karen44

Active member
Joined
Oct 15, 2017
Messages
43
Reason
DX FIBRO
Diagnosis
10/2017
Country
US
State
washingtonUS
I'm a tea drinker, too. My mom was born in Scotland, so it is in the genes! I am trying to cut out coffee, sugar, wheat and most carbohydrates for a month and see how I feel.
 

Karen44

Active member
Joined
Oct 15, 2017
Messages
43
Reason
DX FIBRO
Diagnosis
10/2017
Country
US
State
washingtonUS
Thank you for your reply. It sounds like you are way ahead of me when it comes to improving my diet. For now I am trying to cut out wheat, caffeine, sugar and most carbohydrates for a month and see how I feel. I am waiting for a diagnosis. Everything else has pretty much keen ruled out.
 

Peaceandquiet

Active member
Joined
Apr 17, 2017
Messages
97
Reason
DX FIBRO
Diagnosis
04/2017
Country
AU
State
East
Karen44, have you been referred to a rheumatologist for diagnosis? They really are the ones with a higher level of knowledge and understanding of auto-immune diseases that fibro can mimic.

Best of luck.
 

Tipnatee N

Very helpful member
Joined
May 8, 2017
Messages
594
Reason
DX FIBRO
Diagnosis
11/2012
Country
us
State
New york
Karen44, have you been referred to a rheumatologist for diagnosis? They really are the ones with a higher level of knowledge and understanding of auto-immune diseases that fibro can mimic.

Best of luck.
That's very interesting point and choice of word Peaceabdquiet . I used to think rheumatologist can only deal with chronic pains in general like a bandage . But the thought of their expertise of treating the mimicing symptoms has never cross my mind before. Thank you so much for changing my mind and perspective.
 

Karen44

Active member
Joined
Oct 15, 2017
Messages
43
Reason
DX FIBRO
Diagnosis
10/2017
Country
US
State
washingtonUS
Hi Peace and quiet,
I saw a rheumatologist last year and she didn't find anything. I thought it might be Sjogrens but nothing showed up. She never mentioned Fibromyalgia. This year I saw a neurologist for about four months. She is the one who found I have carpel tunnel in both wrists and peripheral neuropathy. After searching for other causes of symptoms, she is the one who said, It just might be fibrimyalgia. That sent me to my PCP who is an internist. When I saw her yesterday, she did the tender points and and went over symptoms with me and made the diagnosis. The neuro had already started me on Gabapentin for the nerve pain. Karen44
 

Tipnatee N

Very helpful member
Joined
May 8, 2017
Messages
594
Reason
DX FIBRO
Diagnosis
11/2012
Country
us
State
New york
There have always been an ongoing debate about should or shouldn't fibro suferer see rheumatologist cause fibromyalgia doesn't behave like most chronic pain would , because the new found that said it has to do with nerve which isn't rheumatologist speciality . But many years ago neurologist would't treat or accept fibro patients and was the one that pushed fibro pateint to see rheumatologist them self , so that's a nice turn aroud to hear finally Karen44
 

Lubkos way

Distinguished member
Joined
Oct 3, 2017
Messages
123
Reason
DX FIBRO
Diagnosis
03/2002
Country
Can
State
Quebec
That is one of the most frustrating problems that most of us suffer when trying to get a better picture of what was going on in the years,literally the years,before diagnosis.It took 3 GPs and 4 specialists and three and a half years for me to get a diagnosis that made sense,even if half the geniuses won't admit it even exists!All that uncertainty and stress,because they obviously do not know much about it at all and shuffle you around hoping you will leave them alone,oh,and try to pass you off to someone else if they can.God forbid if they have to read about it at home,on their own time without being overpayed for their efforts.Sorry if I sound a little bitter,it is because I still am,a bit,but as time passes I know forgiveness is in the cards,if only for the sake of moving forward and healing!
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,547
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
I was lucky well not lucky but aware what was probably happening to me as my father was diagnosed with PVFS then ME in the 1970's after collapsing and being admitted to an isolation hospital for about 3 months. He under went every test imaginable and nothing definitive could be found yet he could barely stand up let alone walk...and he lost about 2 stone or more ( 28lbs in weight) and there was no denying he was sick.

When he came home to gradually try and recouperate some energy and capability and try to go back to work he simply couldn't do it and it was one step forward 2 steps back until he had to take very early retirement and take life very slow. He was only 46 and i had no idea there was a genetic component and as a teenager and young woman at the time i just accepted my Dad had some rare illness.

Zoom on 30 years and at 47 i was struck down out of the blue after a bad fall and from my symptoms having watched my dads condition i pretty much knew what was happening although that didn't take away my shock or distress.

I pretty much suggested to the doctors what was possibly wrong with me....and got met with a range of responses mostly 'i get tired after a days work too!'.

I didnt see the doctors as gods who knew best and pretty much knew there was little accept caring for myself that could be done. My dad was under the best team of doctors but still aside from pain meds and trying to keep mobile there was no magic cure and my doctor 30 years on pretty much told me the same.

I agree with sunkacola on another thread that these umbrella terms fibro/CFS and ME seem to cover a whole range of symptoms both including pain and fatigue and a whole array and all to varying degrees.

I hope they do find more of a biological cause in the future but i am sad to say i dont think it will be in my life time...but i hope so for the next generations some progress is made with discovering the causes ...but i think there are many causes and this forum seems to prove this is the case...so improving treatments and taking the best care of ourselves and raising awareness about treating us with dignity and respect seems to be the very best we can hope for.

Sorry this is a bit off tangent from the original Karen44's post ....i think sensible and healthy diet can only help and not hinder at all and be one part of complete self care.

Welcome Karen i hope the forum helps you ...we are a just a bunch of people like you looking for answers and support.
 
Last edited:

chblack

New member
Joined
Oct 21, 2017
Messages
6
Reason
DX FIBRO
Diagnosis
08/2017
Country
US
State
NC
I also went to the rheumatologist, and they did lots of tests and didn’t find anything. I have tested for lupus and Lyme disease, too..
 

Tipnatee N

Very helpful member
Joined
May 8, 2017
Messages
594
Reason
DX FIBRO
Diagnosis
11/2012
Country
us
State
New york
I also went to the rheumatologist, and they did lots of tests and didn’t find anything. I have tested for lupus and Lyme disease, too..
Most of us went through the same thing here, some has it some don't. One day I hope there will be the real concrete test for fibro. It seems like they are closer to make it happen. Well at least it help to telling my self that they do cause hope is something that all of us need.

Genetic also a big debating in fibro medical world. I know that somehow my fibro is genetic cause CFS/ME run in my family along with other hearts irregulating problems and many similarity symptom to fibro although they never said anything about it, but mostly when they gotten older. The onlything that made it different with me is that I've got it far too much earlier than anyone in my family history.
 
Status
Not open for further replies.
Top