confused newbie help please - Fibromyalgia Acti...

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confused newbie help please

laulap85 profile image
19 Replies

hi guys im new to all this, im just wondering if any1 has any advice for me, i have just come back from the specialist this morning hes diagnosed fibro but wasnt really helpful...the pain i feel lately is excrutiating, but he seem s to think that by putting me on slimfast to lose some weight (im currently size 16, after 2 babies lol), and cutting out carbs it will be some wonderful cure! surely it cant be that easy i dont eat tha much any way!? ive suffered for 4 years but originally diagnosed with me, today is the first time i have EVER seen a specialist and to be honest feel quite disheartened.

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laulap85 profile image
laulap85
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19 Replies
pjmain profile image
pjmain

Welcome, I am still awaiting to see someone to confirm I have fibro, I too am well over weight, I have cut out carbs, but eat Spelt bread instead, sweet potatoes and use sugar in my tea not sweetners, I am hoping to get back in the pool to do a little excersise......

I self-diagnosed myself and it is very frustrating when people don't take the pain you have seriously, I found myself having the fatigue lately and the pain I have attacks anytime during the day, just no rest..xxxxxx

Unfortnately a lot of specialists are specialists in something but not fibro ... If you read blogs on here you will find at some time or other we have returned from a specialist in tears of anger and frustration . Umm and a size 16 doesn't sound too big to me ... So telling you to lose weight to help fibro is not particularly helpful...

The best thing any fibromite can have is a sympathetic GP once you have a diagnosis , there are lots of meds available for pain control and sleep available. Most of us are on an antidepressant to help with sleep and a low dose muscle relaxant to help with spasms and sleep and then its onto pain control meds again there are lots to choose from and. It's trial and error as to finding out what suits you. Unfortunately this usually takes lots of trips to the GP not the most fun place to spend time.

I have had fibro for 23 years... I have my sleeping under control for which I am very grateful, but pain management is another , my old pain meds suddenly decided not to work any more so am going through med change over again.

Welcome to the site. This is a great site plenty of people on at all times of the day and post as much as you like with questions or vent your frustration or join in the silly threads....

If you aren't on any meds at the moment or you feel they are not helping the pain please go back to your GP if you are very upset either take someone with you to explain , or write a letter/list of what is wrong .. I have sat at my gps blubbing while he reads my list of what is wrong then he does his best to sort it....

Hope that has helped a little

VG x

laulap85 profile image
laulap85 in reply to

thank u very much ;-) helps alot. im on amitpytaline, citalopram omoprazole,zapain,naproxen but even on all these im still in pain most of the time, i just feel so dwn at the mo and thats not me at all.....back to the quacks i go thern lol x

anne67 profile image
anne67

hi vg i am also a newbie here i was at my docs today and she thinks thats what i might have she has started me on duloxetine any 1 else on these meds x

Welcome to Anne hope you enjoy this site, well as much as any of us can with fibro :( I personally am on dosulepin but duloxetine is one of the many meds used for fibro .... I Hope it works well for you and I am sure there will be answers rolling in for you .. Please feel free to blog and ask questions and join in the fun too, I am afraid I haven't tried duloxetine myself but I am sure there will be others on here who are and will answer....Please if you find it doesn't suit and you do experience side affects listed that are bothering you please go back to your GP there are lots of meds out there to help

Fingers crossed VG x

Aisha profile image
Aisha in reply to

I was on Duloxetine thinking this will be the answer for me and help my Fibro but alas no it gave me terrible side effects after one week and stopped them straight away but my friend who has had fibro for 23yrs thinks its a wonderful drug! I domt toletate a lot of meds0so thos may work for you! Good luck X

phlebo123 profile image
phlebo123

Hiya and welcome:) The problem for specialists is although they can diagnose fibromyalgia they can suggest very little to help us. There is no magic pill to give us -- all they can do is give pain killers which help to "mask" the pain but does not actually take the symptoms away. We basically have to learn to manage/ pace ourselves so that our symptoms are reduced to a minimum -- they call it "becoming an expert patient". I have mentioned this site before -- pain toolkit.org -- it has a booklet you can print off which is really useful ( the pain toolkit).Don't feel disheartened -- it is a lot for you to take in -- but ask as many questions as you like on here -- we all understand how you are feeling, better than the specialist can!! I don't believe losing weight is going to get rid of the fibromyalgia -- but if it makes you "feel better about yourself" then go for it! I find that my symptoms are not so bad if I eat small meals more often especially foods with high G.I. (E.g. oats) Make an appointment with your doctor to discuss where you go from here. good luck xx

Ozzygirl64 profile image
Ozzygirl64

What an utterly stupid and totally unwarranted suggestion. These 'specialists' never cease to amaze me.

I was diagnosed 22 years ago after 4 years of hell with it. My FMS is now chronic. Yes I had weight issues in the past but I was NEVER told to lose weight. How things have changed. I did lose 7 stone in under 2 years recently and I am currently back on my diet with support from VG when she started her diet blog. My big weigh in 16th March so that will be the first 8 week stint done for me. But I had recently(15th January) seen a specialist because I have ruptured the plantar fascii, ruptured another tendon, tightened achiles with risk of rupture and posterior tibial dysfunction, all in the right foot. Left foot plantar fasciitis and tight achiles, at risk of rupturing. And he used the word OBESE after weighing me, okay I was 16st 3lb, so I admit I could do with losing some weight. But specialists these days hunni bandy the word 'OBESE' around like they are gving you piece of candy. I would take very little notice and only lose weight IF you feel you need to. To easily these days they are ready to put all our ailments down to excess weight and it is unfair. We are feeling bad enough without that.

FMS is down to a chemical imbalance in the brain which in itself cannot be cured. You can only treat the problems it causes. We have pain and the imbalance causes that pain to be 10, 100, even a 1000 times worse. My GP has never said 'lose weight and your FMS will go away/get better'. What a load of tosh.

XXXXX

laulap85 profile image
laulap85 in reply to Ozzygirl64

thanks lol...wasnt really looking forward to living on salad leaves and chicken lol xxx

Ozzygirl64 profile image
Ozzygirl64 in reply to laulap85

I do not even do the chicken bit lol xxxxx

ladymoth profile image
ladymoth

Hello and welcome to all our 'newbies' I hope you will find all our collected tips and strategies helpful to you as you 'fight the fibro'.

fibroaction.org/

I can't believe that a consultant said that losing weight will cure you. The man is a plonker! It's true that if you have arthritis then being much too heavy makes it worse, but I can't see the relationship to fibro. I'm size 6-8 and my fibro is a real pig!

A healthy diet is bound to be a good thing, tho', so whatever your illness it's good to be careful what you eat.

if we have fibro, we tend to be referred to a rheumatologist. They are not always interested in fibro - and some of them deny it's existence! It's important to see a specialist who actually knows something about the subject, and I'm amazed that GPs don't do their homework before referring. Maybe we should compile a list of regional specialists who are interested in Fibromyalgia, and make it available to members. I will ask about this!

Anyway, enjoy your time with us, and have a laugh with us too - we're not all about pain!

Moffy x

anne67 profile image
anne67

thanks i am very confused as i was admitted to hosp for attypical chest pains in nov all my results came back clear and i also have a stress fracture in my left foot tennis elbow in right arm also spondylitis in neck and very painful hands also have chronic back pain had cortisone injection for elbow now going through acupuncture with physio which is excruciating and also attend stobhill pain clinic been on patches tramadol noritryptiline also lyrica which i get really bad side effects also soz for going on but im at my wits end i also am still getting chest pains so no further forward lol xx

If all the usual danger things have been cleared about your chest it COULD be chostochondritis my first symptom I developed with fibro and its a real pig of a symptom. I have had this and fibro 23 years and I honestly thought I was having a heart attack ... It's a flare up of the ligaments that join your. Ribs to your backbone and sternum and of course the more you breathe the more they stretch and the more it hurts... Painkillers and a hot pack and plenty of rest seem to be the only option .... Can last hours days weeks and for me now its permenant to some degree...

Hope that might be of some help but I really hope it's something easy and simple to cure

VG x

anne67 profile image
anne67 in reply to

thanks for that im really stressed at moment had im not sure a panic attack last nite really frightening is there a test for this chostocondritis i can get thanx xx

LindseyMid profile image
LindseyMid

If you have Fibro, losing weight will not cure you. And if you have Fibro, you may also have IBS, or be at higher risk of developing IBS, as this commonly goes along with Fibro. If you did have IBS, then a slim-fast diet could potentially be harmful.

Are you getting anything from physio other than acupuncture? There isn't much evidence that acupuncture can help long-term with Fibro, as any benefits are often short-lived. See the Complementary Therapies & Fibro factsheet for more info: fibroaction.org/Pages/Compl...

This article on Physio may also help:

fibroaction.healthunlocked....

lbvac40 profile image
lbvac40

I've had Fibro for 40 years, since I was 17. Back then there was no such diagnosis. After two years of severe pain I finally went to a doctor. After his examination he looked at me with disdain and told me there was nothing wrong. I was just trying to get attention. I left and have not relied on doctors. It turned out to be a blessing after all because I have found ways of managing my pain without drugs. I heard it described as a cascade of symptoms rather than one condition and I have found that to be true. In a nutshell, I avoid sugar like the plague! If I eat it my pain gets very intense. I also take a high quality probiotic. High quality is the key. I've taken many that were not and they don't do anything. There are two that have been effective for me. One by Herbalife and one by BioTrust called Pro X10. Thirdly I do exercises that are designed to keep me aligned and flexible. Check out Egoscue.com. I have my flare ups, such as major surgery two years ago, but I have been able to battle it back down. Those are my top three strategies. There are a few more. Don't give up. Our road is a difficult one but we can make it.

Hi loulap

Welcome to the site... I guess its taken a while to get this diagnosis. It will take a while to find out about it and what works for you... We're all different. For me I'm using diet, and gentle exercise. I find the wii fit balance games good, and some shibashi qi gong. I take co enzyme Q10 regualrly, and magnesium, or have epson salt baths, or foot baths, I use far infrared thermal therapy, acupuncture and bio- resonance (that rebalances my system, but then I have ME/CFS too) and I take some homeopathic drops.

The best starting diet for me has been.....

9 Diet Commandments for Pain Patients

By Kate Francis

Reviewed by QualityHealth's Medical Advisory Board

Those suffering from chronic pain, such as fibromyalgia and arthritis patients, have reported a worsening of their pain and stiffness after eating certain foods. While it is agreed upon by medical experts that there are a variety of causes contributing to chronic pain, there is growing evidence that diet it one of these factors. For this reason, many patients are turning to diet changes to get relief.

Why Certain Foods Increase Pain

According to Daniel Arkfeld, MD, a rheumatologist at the University of Southern California's Keck School of Medicine, certain foods may trigger the release of neurotransmitters that heighten the sensitivity of nerve cells in the spinal cord and brain that may be involved in the way patients process pain.

Chiropractor Ned McArthur, D.C. of Utah says that foods high in Omega-6 fatty acids with little or no Omega-3 fatty acids cause inflammation and therefore are another reason for pain. These foods include sugar, flour, white rice, baked goods, pasta, caffeine, processed and/or packaged foods, artificial colors, artificial sweeteners, preservatives, alcohol, hydrogenated oils, and fast foods. McAruthur says the ideal ratio for Omega-6 to Omega-3 fatty acids is 1:1, but the average American has a 30:1 ratio.

9 Diet Commandments for Pain Patients

Although the research on diet and chronic pain is limited, experts suggest the following may help:

1. Cut back on carbohydrates. This will help stabilize your Omega-6 to Omega-3 ratio. Additionally, according to Kent Holtorf, MD, the founding medical director of the Fibromyalgia and Fatigue Centers, about 90 percent of fibromyalgia patients have low adrenal function, which affects the metabolism of carbohydrates and may lead to hypoglycemia. Tip: If you eat carbs, it is best to eat them with protein and fat

.

2. Consume plenty of Omega-3 fatty acids. Omega-3 fatty acids, found in salmon and a variety of other fish, are said to reduce inflammation. Fibromyalgia and arthritis patients have reported feeling much better once they increased their consumption of Omega-3s.

3. Avoid aspartame and other artificial sweeteners. Aspartame is an artificial sweetener found in diet sodas and many sugar-free sweets is part of a chemical group called excitotoxins, which activate neurons that can increase sensitivity to pain.

4. Avoid MSG and other additives. MSG is a high-sodium flavor enhancer often added to fast food, Chinese food, and processed packaged foods. It is an excitatory neurotransmitter that has been linked to stimulating pain receptors.

5. Avoid or limit caffeine. Fibromyalgia patients often suffer from unrestful sleep and fatigue, and often try to remedy their fatigue with caffeine. This only perpetuates the cycle of unrestful sleep. Try cutting back, and then eliminating caffeine completely (this includes coffee, certain teas, and chocolate) to see if it makes a difference for you.

6. Avoid or limit intake of nightshade vegetables. This includes tomatoes, potatoes, and eggplant. Some fibro and arthritis patients have reported feeling worse after eating these vegetables. Others have reported feeling dramatically better after cutting these out.

7. Avoid or limit your intake of yeast and gluten. Celiac disease (allergy to gluten) has been found in some fibromyalgia patients.

8. Avoid or limit your intake of dairy products. Fibromyalgia patients on vegan (no dairy) diets have reported improvement in their condition. About 70 percent of adults worldwide have some degree of lactose intolerance, so it is not surprising that some fibromyalgia patients do too.

9. Eat more fresh foods, and in particular, organic foods. This means foods without additives or preservatives. Patients have reported feeling better eating fresh foods, and in particular foods without pesticides and chemicals. Roughly half of fibromyalgia patients also suffer from irritable bowel syndrome (IBS). Foods that irritate the bowel trigger the brain to send a message that signals fibromyalgia symptoms and perpetuates pain.

Experiment with cutting out the suggested foods (either one at a time or all at once) for a couple of weeks to determine if they have an effect on your pain. At the same time, begin to add the suggested foods to see if in fact there is a correlation between your diet and your pain.

Sources

Betsch, M. 10 Food Rules for Pain Patients. Health.com. health.com/health/gallery/0.... Accessed March 5, 2010.

Can you Diet Your Pain Away? PR Newswire. prnewswire.co.uk/cgi/news/r.... Accessed March 5, 2010.

Fibromyalgia and Fatigue Centers. fibroandfatigue.com/. Accessed March 5, 2010.

National Fibromyalgia Research Association. nfra.net/default.htm. Accessed March 5, 2010.

I hope that helps

Stepper x

laulap85 profile image
laulap85

thanks to everyone for all your helpful advice and taking the time to answer me, all VERY much appreciated xxxxxxx

Hello laulau, pleased to meet you here.

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