ME or fibro ????

[Jems]

Just watched a programme on ME and the symptoms sound more like me than fibro. Can anyone help me with this. My doc doesn't acknowledge either so the only help I get is from my nutrtionist.

What can I do to help myself get better. I've been like this for 17 years now and as a 47 year old see my life passing me by as since my late 20's I have been able to do less and less . My weight has piled on and I'm now 5 stones overweight. I've been old years before my time and I dread the future.

Help!!

:confused: :confused: :confused:

[Zuleikaa]

What symptoms?

Could be a vitamin D deficiency if the weight piles on, especially in the winter.

[quietone]

I'm sorry to be dumb...but what's ME?

[Jems]

I ache all over - muscles and joints, very poor sleep, always tired, get exhauseted (bit like the burn you get when over exercising and can't bear to lift your arm etc) headaches, migraines, biting hard at night so dental problems, even walking is an effort, back ache, arthritis. Plus very overweight and extreme difficulty in losing it. Goes on easily though!! Do a lower carb and candida diet. Nutritionist diagnosed candida and hyperglycemia. Had adrenal tests and burn out results and waiting homeocysteine result.

Sitting here in dressing gown trying to find the energy to bath and dress! NHS doc just says its depression but I don't feel depressed (occasional low times) Taking loads supplements but I don't think they're doing anything. Really need some help here.

Help!

[quietone]

Hi, Jem

It sounds like CFS or fibro. I always get flares during the winter months and during July/August. Does this sound like you?

[Micha2]

Hi Jems

I have very similar symptoms to you. The doctors I have seen (in Milton Keynes) didn't distinguish between CFS or ME (which is the term used in the UK) and Fibro, although they have said if the problems started with an infection and your main symptom is fatigue rather than pain, it is more likely to be ME. The symptoms overlap greatly anyway. I was probably lucky that both my GP and the company doctor acknowledged that these conditions exist.

I can't lose any weight either despite dieting and have to be careful not to get too depressed about this. I have tried the antidepressant 'amitriptyline' (not for depression but to help with sleeping and the pain) and although many fibro/cfs sufferers benefit, I felt even drowsier in the morning and so came off the drug but it is worth a try. It has to be a very low dose to prevent any side effects.

At the moment I take a fairly high dose of Co-enzyme Q10 for energy but apparently it takes a few weeks to take effect. You can buy it in Holland & Barrett, although it is not cheap.

I also started to take a substance called Sam-e (s-adenosylmethionine) that has helped other fibro sufferers with pain and stiffness. Again this is very expensive and not available in the shops, I got it over the net. I haven't noticed anything yet but again it is early days.

And lastly (shows how desperate I am) I have just ordered magnesium/malic acid from the nutricentre website because there is evidence it might help with the pain.

I also asked for free info from the CFS/Fibro clinic in London (Professor Davies) and although their treatment sounds good, it is mega expensive. If I don't see any results within the next couple of weeks with the new supplements, I am going to make an appointment with them.

If you search the net, there are local ME/Fibro support groups and websites that usually have a wealth of info.

All the best

Michaela

[Jems]

I've tried various supplelements (including those you mention) but have not seen any results despite spending approx £170. month - I'm seeing a registered nutritionist and have had various tests too. It's all so expensive but I still feel so awful!

Is there light at the end of the tunnel eventually? - I've been like this since I was 30 - 17 years ago ! I'm so desperate to get my life back. My weight has piled on and I'm housebound for most of the time. Basically - I'm fed up! Sorry to go on - but the pain, stiffness and fatigue is getting on top of me at the moment!

:cry:

[quietone]

Hi, Jems.

I'm so sorry you're feeling so bad.

Are you feeling any better at all since low carbing? It sure does help me with the pain of fibro.

Also, have you read anything here about the Vitamin D. It seems to be helping quite a few of us.

My fibro always gets worse this time of year too.

Right now, I seem to be in pretty good control using my sun light, vitamin D and low carb.

I know how awful it is to feel so bad yet have everyone tell you there is nothing wrong.

If you want to try another antidepressant, I found that Effexor worked for me and it also worked for another friend with fibro. but I don't like the side effects and getting off of it is horrid.

[Laurentl]

Hi,

Since someone above mentioned a CFS clinic in london.. I was referred by a younger GP in my local clinic to the London Homeopathic Hospital, Great Portland Street. Unfortunately took several months for my first appointment and 4 months between them but I have free access to a consultant and a behavioural therapist.

One of the things they helped with is more thorough blood tests such as sugar fermentation which indicated that I have a very bad case of candida. This is probably causing, if not very related to, my CFS conditions that I have been experiencing for 4 years having taken a strong course of anti-biotics for pneumonia from when I was in hospital.

The consultant I was referred to is Dr. Jenkins and I highly recommend him.

To help my CFS & candida I currently take daily

selenium
chromium
omega 3
multivitamin
acidophilus
anti-fungal - amphotericin
raw garlic
gapeseed tablets
psyllium husk
NaDH
low yeast, low sugar, low gluten diet etc

Nothing I seemed to do had any effect until I very rigidly stuck to the diet and started taking in addition to everything else raw garlic and grapeseed tablets. Now I feel very very crappy but less so than a few days ago when I first started taking them. More headaches, brain fog and sinus problems. I assume this is a die-off from other postings and my own research since I am gradually feeling better. Hopeful to be feeling more normal in a few months time.

Regards,
Laurent

[wcollier]

Hi Jems:

Have you had your thyroid levels checked? Not just TSH as it can be normal with people who have adrenal fatigue. You need to have your FT3 and FT4 levels checked. Adrenal fatigue and low thyroid commonly go together.

Checkout out this metabolic scorecard (http://www.drrind.com/scorecardmatrix.asp)by Dr. Rind. You'll notice Fibro and CFS are considered symptoms of both Hypothyroid and Adrnal Fatigue. I've noticed my muscle problems greatly reduced when I started taking thyroid meds.

Also check out Dr. Teilebaum's (https://www.endfatigue.com/home.nsf)website, who is a physician who suffered from Fibro and CFS. Balancing the hormones is a HUGE part of his therapy.

Just a thought.... I really, really hope you get better.

Wanda

[Gailew]

Hi, I thought ME was what UK calls CFS, the same malady. Anyway, I'd like to add input to the meds already mentioned. I took malic acid for years and it really helped me with muscle pain. Others would take it and come back to me saying it did nothing for them. Another case of YMMV I don't seem to need it anymore, but I do take SAM-e. I can't cope without it. In the summer I can get down to one in am one in pm, but in the dead of winter, I'm up to 6 2x day! If I'm taking too little I turn into a raging witch, so bad I can't even live with myself. It helps with joint pain too. Now I only get joint pain when I eat wheat. ANother med that helped me and others I know with the sleeping is Neurontin. I've stopped taking it, but it sure helped for awhile. This forum is so helpful, wish I'd found it 25 years ago! I encourage you to just keep at it. I am gradually getting better. I was where you are 15 years ago, and today, at least in spring and summer, I act like a normal person, well, one who likes to sleep in and get a slow start! LOL As you can tell, the syndrome seems to change for me, and as I find what helps in each area, the benefits hold, so yes, there is definite hope! You will get better! Get as much rest as you can, that's important. --Gail

[quietone]

Gail, it sounds like you suffer with both winter and summer SAD, which I do too, as does my youngest daughter. I get very depressed in the winter, and turn into a monster in july/august. I also have terrible fibro flares during those times and have believed for some time that the mechanism that causes the problems with my moods, also is in some part making the flares come on.

[Gailew]

Finding this forum is the first time I've been able to compare my symptoms with others that have as much complications as I and I am learning so much. Our hormones are like those mobiles put above a crib--touch one thing and everything moves around. Right now I'm not making a whole lot of sense out of it all, but I'm hoping it all gets clear soon!
Quietone, I'm not sure I have summer SAD. I do well on Sam-e for mood stability all year, but need more of it When the days are dark and short. Is that what you meant, or did you pick up on something else? I have never heard of it before. --Gail

[sandi24]

Hi Jenn,
My symptoms are similar to yours , I am 48 and have had FMS for 23 yrs :( It does sound like fibro to me.. but all auto immune illnesses seem to have similar symptoms.

I sympathise with you as I know how you feel, like I keep telling my hubby if I was a dog I would be humanely 'put down' as no one could stand to see an animal suffer this never ending pain and fatigue.

On the weekend I found a link to a site thats interesting. Its a veterinarian that has suffered with FMS,CFS and other illnesses for some time now.

He has found a 'cure' for himself the first time in four years he is free from pain meds and has the energy to do things he was unable to do for so long. All the information is there, no books to buy, no advertising, no garbage like the other doctors site ( I found there you have to buy this test that book etc)

This guy just wants to let everyone suffering pain to be free from it like he is now. As I say I only found it yesterday and one girl on another FMS site says she is now 95% free from fibro pain following his advice.

Okay now the hard part - no it isnt going to cost you anything in more pills or concoctions.. this doctor believes we have intolerances to food . He recommends a total gluten free and dairy free diet. Well I love my wholegrain braed and my yoghurts but I am desperate to find anything to ease my suffering.

I started it yesterday! as what have i got to lose ?? We are in catch 22, we are in so much pain and fatigue we cannot excercise (when we do we are in ten times more pain for weeks)
yes the pounds pile on especially at our age, I am perimenopausal which again is supposed to make losing weight harder at this time.

Take a look and make up your own mind. I admire the man for taking so much of his time to make all this information freely available to all.

His site is DoctorJ ( fibro fog I cant remember if I can post the actual site address here or not!) Just do a google search and it will come up under his name. Whilst he is a vet , his site will give info for pets and humans and he actually asks for feedback from people and any questions you may have so very accessible.

Heres a snippet from the site -
(BTW he asks people to copy and use and freely distribute his writings in order to help everyone possible..)

So, I know you're ready to tackle this issue now, right? Like so many things, starting out is most of the battle. The really cool thing about the "elimination diet" is that positive results often (in fact, usually) occur quickly...very quickly in many cases. I noticed a difference on day FOUR of eliminating wheat. I awoke with the distinct feeling that I didn't need coffee that morning for the first time in twenty-something years. By the end of the first week, I felt like a new man...my heartburn was gone, my intestines were quiet, and my head was clearer than it had been in years. By the end of the month, my pain was gone. Wow! Now, after nearly four years, my insomnia, IBS, fibromyalgia, chronic fatigue, and even my allergies are all gone. I am prescription drug free for the first time in my adult life and feel better than I did when I was twelve. This is all totally explainable and I know that it can happen for millions and millions of people around the world...thus my passion.

All it takes is a little step of faith and a commitment to sacrifice for a short while to see results. Then, the results become the motivating factor to keep going. It becomes a self-fulfilling process in the opposite direction...an unwinding of the ever-tightening "spiral" in which we find ourselves today. You can do it. Anyone CAN do it. It is just a matter of believing it and being motivated enough to try .....

Hope this helps,
sandi

[quietone]

I can't take Sam-E. It raises my blood pressure just like Welbutrin.

Winter (nov. thru mid-mar): depressed, lethargic, crying over commercials, gain weight, don't feel like moving, don't want to go to work, don't want sex, don't want a man around, don't want to socialize, sleep problems, fibro flares

Summer: extremely irritable, lethargic, extremely irritable, sleep problems, extremely irritable, fibro flares, stomach problems, irritability.
I have used Vit D this year along with my light, and have done pretty well, also using serenity.

In July/August, I put up room darkening shades, only go out when the weather is cool and that helps. Have yet to find anything to take to help the situation.

Since using D, and finding that if I take too much I get really irritable, I am wondering if there is any connection whatsoever to summer SAD. Summer SAD is not common, but it seems to run in my family. I have a couple of sisters with it, one brother, and my own daughter who have it. I actually did not have winter SAD until the last 15 years. Or at least if I did, it wasn't so bad that it messed with my life. Now it is. I can not tell you how many relationshiups I have ended in Feb. (all of them, except my current husband) or how many jobs I resigned in July.

there is some reason that the top suicide months are Feb. and July!

I thought you had summer SAD because you still take the SAMe then; sorry if I misunderstood.

[quietone]

Hi, Sandi and Jenn -

I believe in what this guy says. The first time I did Atkins (1998), I did it very, very strictly. I essentially followed what this dr. says because I didn't eat any thing except meat, eggs and green vegs. No processed foods where hidden ingredients could lurk.

Not only did I lose an exceptional amount of weight very quickly, but all my fibro symptoms disappeared. I was pain free for the first time in a long, long time. Although then I didn't know it was fibro. I just knew I hurt all the time. My stomach hurt all the time. My everything hurt. It was the first time since probably 1980 or so where I could press on my stomach and not have it hurt really bad because the intestines were so messed up! Of ocurse, when you tell the doctor that they say to eat more fiber.

Unfortunately, it didn't help with my SAD. Not even a little bit. It helped me stop swinging around mood-wise because of the constant sugar explosions, but it didn't help the seasonal changes.

[Gailew]

Wow, I had a similar experience to Sandi24. When I first started lo carbing, I felt dramatically better, and then every time I added wheat back into my diet, FM symptoms came back. I know it sounds awful to go without wheat, but honestly, I don't miss it at all. I've learned to cook muffins etc. without wheat that are yummy, and converted all my fav recipes. I think it's well worth trying for a week or so to see how you feel, Jems.
Quietone, since Jems isn't focussing on SAD in this thread, maybe any more thoughts on that could be in my journal? It seems to be a bigger prob for me than FM this past year, since going low carb. --Gail

[sandi24]

Sorry guys I got the name wrong for those of you that searched it.. its DogtorJ my apologies :)

[quietone]

thanks, I had searched and came up with Julius Irving :)