Questions about CFS and Fibromyalgia
 

I was wondering if CFS can cause tingling/numbess in different parts of your body? I was also wondering if Fibro can do that also but without pain? I dont have pain just tingling/numbness/fatigue/memory loss/raynauds etc...but im wondering what could be causing it besides MS and wondering if either of these can be involved..thanks for any comments

Forget about the name CFS as it is a bogus invention and not a recognised diagnosable illness.
Research M.E. instead for factual information.
Here is a link:
http://www.hfme.org/themesymptomlist.htm
And a quote from the symptoms list:
Transient tingling, numbness and/or burning sensations (or other odd sensations) in the face or extremities (paresthisias).

CFS is not a bogus invention and is recognized as a diagnosable illness, it's a syndrome. Those of us whom suffer from it know it is real.

However CaliforniaFriend, I am not sure that CFS in itself can cause tingling or numbness. It definitely is fatigue, which in turn can cause memory loss. Raynauds is a form of arthritis, which many fibro's do have. I have all of the issues you mentioned and do not have MS. Have you been to see a neurologist? Had any neuropathy testing done? That's where you should start. A brain MRI usually can rule out MS.

Hi Deb, I hope I can help you find out what illness you really have.
Did you follow the link in my previous post? There you will find it all clearly explained, with both long and short versions available-some ill people can't spend time reading a lot.
A syndrome is just a concurrence of symptoms. It doesn't mean anything else.
The misdiagnosis of CFS may be a convenient one to give when your doctor doesn't want to pursue your illness with tests etc, but it doesn't help you, and in fact may be stopping you from getting a proper diagnosis and hopefully treatment.
Don't accept CFS-it doesn't exist-a syndrome is not an illness, just a collection of symptoms that may occur together in some form.
You need to have a variety of tests done-blood, heart etc. You may have serious allergies or dietary problems, chemical sensitivity-who knows.
But you must take charge yourself and not just leave it up to a doctor who hasn't studied these types of illnesses.
Unfortunately you may be in a murky area from a medical viewpoint, so you need to find a knowledgeable and helpful doctor. They can be hard to find.
I have lived around this type of illness for over 10 years, so understand your situation.
Please read some of the articles in the link that I posted, and see what you can do to find out just what is making you ill.
This quote may help you:
"M.E. is a clearly defined disease process. CFS by definition has always been a syndrome. Although the authors of these 'CFS' definitions have repeatedly stated that they are defining a syndrome and not a specific disease, patient, physician, and insurer alike have tended to treat this syndrome as a specific disease or illness, with at times a potentially specific treatment and a specific outcome. This has resulted in much confusion. The physician and patient alike should remember that CFS is not a disease. It is a chronic fatigue state. Patients who conform to any of these CFS definitions may still have an undiagnosed major illness, certain of which are potentially treatable."
Dr Byron Hyde

Thanks Peter. I do research, all the time. I have been at this for years. I do have other issues and I am dealing with them as best I can. I am gluten intolerant (gluten free for nearly 11 yrs), now totally grain free (all grains contain gluten, not just wheat, rye, and barley), nightshade free, cruciferous veggie free, sugar free, processed foods free. I lost 95# last year and have kept every # off..lost it from March to Oct and have kept the weight stable since Oct. I have small fiber sensory polyneuropathy, seeing a neurologist, who I might add wanted me tested for adrenal insufficiency (mainly because of my low BP). I have my cholesterol down to 158, my pre-diabetic levels are gone, glucose now around 85. I have had so many blood tests it would seem like I have been drained, cat scans, MRI's, recently 22 x-rays for arthritis, a diagnosis of CFS (2 yrs ago), fibromyalgia (March, which I know I have been dealing with for years and years). We have done the process of elimination over the last several years. I have seen an endo, and ENT, a sleep doctor (diagnosed with sleep apnea nearly 3 yrs ago)..I have the best neuro out there, my PCP's are great. Where do I go from here? Exercise and the good diet I eat now...hopefully will work for me. I can't take medications, they all cause flares in my healing leaky gut, another syndrome, I'm guessing is what you are thinking. It's all a Catch 22, we do what we have to do.

I'm not trying to be rude. I have been tested and retested, then tested some more. Brain MRI, cervical MRI, sinus cat scan, abdominal cat scan, abdominal MRI, bone density, EKG's, EMG's (both types for nerve conduction testing), gene testing...it's all been done, sometimes over done.

Even if CFS isn't a real diagnosis to you, I know I am chronically fatigued and no one has figured it out. I take vitamins, B Complex, B12, multi, Vit D..I walk daily.

I'm trying, no one can ever say I haven't gave it all I gots!:p

hi Deb-wow you are having it tough. So pleased to see that you are taking charge. Medical science has lots of gaps.
My daughter has severe M.E. (it is her website in the link) which she has extensively researched as there was just nothing of use out there.
As she is house-bound the number of tests she has had is limited, though she does get home kits for blood tests.
There is no known cure for M.E., just suggested treatments.
The good news is that she is getting better exponentially! It's been gradual up to now, but we can see a marked rate of improvement.
The problem is that as she takes so many things, has revised her diet several times, and does other things that are meant to help, she doesn't know what is working and what is not.
Diet is a major factor and she is now on fresh juices, lightly cooked vegies, meat daily, no dairy, wheat, sugar, yeast, manufactured foods, soft drinks, alcohol and so on. Distilled water now, and she uses a sauna for detoxing. No chemicals in anything.
I guess it is unlikely that you will be any different, so you just have to keep plugging away.
One aim is to find the cause or causes, the other is to rebuild the immune system to cope.
Have you looked into multiple chemical sensitivity? My daughter was exposed to several flea bombs before she became ill, and we wonder if these compromised her immune system.
I hope this gives you some encouragement.

I don't know what to think anymore. I truly blame all of this on gluten. I went so many years eating it when it was the worst thing for me, yet I didn't know that. The information about gluten has changed so much over the last several years. I had never heard of gluten before my sister went gluten free 11 yrs ago last month. It will be 11 yrs for me in July.

I was reading some of the symptoms..I do not have any cardio issues. I do have low blood pressure, emotional symptoms, polyneuropathy, and headaches, to name a few. There must be blood work specific to this. I will research this more...thanks for the info.

I believe that cfs and fibro are real also.

I can't imagine not having my help with the doctors. If I didn't have the
diagnosis's.

I believe to each their own thoughts.

Donna:grouphug:

Do you mind sharing the treatments that you have been offered?

Not sure if you are speaking to me or DMOM.:p

Before the diagnosis of fibro, my neuro had me try PT for 11 weeks. He thought PT on my neck/shoulders may help the headaches. At the time I was only having trouble with my left side. The moist heat felt great, then one person would come in and do a gentle massage, then the therapist would come in and do a more intensive massage. After that, I had to do some band exercises and a stationary bike exercise, then another short massage. By about 6 treatments, the right side began to hurt. By week 11, I was in more pain than when I started...the neuro said no more PT for me.

I was on Topamax for over 1 year with my first neuro, which did nothing, the neuro I have now took me off it.

I went on a candida diet to help with my leaky gut, lost 95#, am thinner than I ever have been in my adult life, walk daily in good weather (can't walk outside in winter months, my Raynauds causes too much trouble), then came my appt with the rhuemy.

The rheumy put me on Meloxicam, Flexeril, and 325 mg aspirin daily. I got very sick, the combination caused a flare in my leaky gut. I told him about it, so he thought he would give me something for my stomach, which I refused. I did mention that I can take Aleve 2x's daily, so he told me to increase it to 2 pills at lunch, 2 at supper, and a baby aspirin...caused more problems with my leaky gut. So, now I am not taking anything except Celexa for the anxiety it all caused. Finally, after 6 weeks I am doing much better leaky gut wise, yet still have the pain. I can deal with the pain much better than gut issues. Our nasty weather has been very hard on my arthritis, but I am holding my own.

Now if I can get my extreme fatigue under control, I will be happier.

Hi Deb, I'm interested in what your doctor has offered in the way of treatments, as a comparison to what happened to my daughter.
She was admitted to hospital by ambulance a few years ago when her heart began racing.
She told them what she had but they completely ignored her. They had no knowledge at all of either CFS or M.E.
Her requests for a darkened quiet room were ignored, as was her advice that any blood pressure tests must be done while she is sitting up, not lying down. It is when sitting or standing that the blood pressure drops.
Test that were done were a complete waste of time. They just didn't know what to do and didn't want to be told.
They were very rude, unsympathetic and uncaring.
As far as drugs go, she is very sensitive to them as a general principle, and will always start with a tiny dose-a sixth or a quarter, for a few days to see what happens. She also researches it before agreeing.
You can also get a reaction to the fillers used!
Exercise. If you have M.E. it is very likely that exercise will lead to a sudden relapse. You may be similar. Any exercise should be started very gradually, in tiny increments, and any adverse reaction looked for.
Many CFS 'experts' insist on an exercise routine.
In fact, rest as soon as the illness presents is the best way to lessen its impact. But if you can't get diagnosed quickly, it may be too late.
Fatigue is not a necessary symptom with M.E.-some have it, some don't. My daughter doesn't.
Was your fatigue illness rapid onset or gradual?
Is your doctor still investigating possible causes of it?

The more I read, the less I feel this could be an issue for me.

I know we can react to fillers in meds. Often times when a person reacts to a med and calls a company, when asking about the fillers, the company will have no idea what's in the fillers. To me, they have no business listing the med as gluten free if they do not know what is in the fillers. This has happened to me more than once. Just as your daughter takes a tiny dose, that is what I think I should do too.

I walk every day without issue. Well, my feet hurt and sometimes one knee, hips...yet I keep going. Neuropathy can do that to a person.

I think my fatigue was gradual, but I have had fatigue for so many years now, I'm not sure anymore.:confused:The fatigue as of late seems much worse, yet I can't say if it came on fast or not. Not much help am I?

I find it can be hard at times to remember this sort of thing, too. I now keep a diary and note all medication taken and the time, as well as a brief note on significant symptoms.
Is a leaky gut referring to reflux? This can be a symptom of M.E.
The health of the gut is vital to your overall health, and is the first thing that you need to treat.
A quote from the HFME site:
Some of my biggest mistakes include the following:
Not fully understanding the enormous importance of gut health and of diet. As I have recently learned, good gut health is vital to recovering from any disease as the gut houses half the body's detoxification system and half of the immune system. Food should be treated with the same respect as a prescription drug.

http://www.hfme.org/treatmentconcepts2.htm#703252345


Have you had comprehensive allergy testing done?
What is your doctor currently doing for you, or have you both given up on each other?

I eat very healthy, just not a wide variety of foods. I am intolerant of many foods, figuring it all out by trial and error. I have finally found the foods I do well with, and stick with them. I have decided, unless absolutely necessary, I will not take meds...they always cause a flare with my leaky gut.

I have not given up on my doctors, nor them on me. They respect my thoughts and I try to do whatever they feel I should try, within reason. They know I will only use meds as a last resort and never pressure me.

My food issues are not so much allergy as intolerance, which is much harder to test for and very costly. Over the last 11 yrs, I have figured a lot out on my own, often times asking the doctors for certain tests and they usually have no issue working with me. When I went on the candida diet and started losing weight I realized I had finally found one answer. 95# later, I am much happier, still learning though.

Yes, intolerance is the hard one. It's all so hard to sort through and try to spot any differences.
Have you considered a naturopath for a different assessment?

I have thought about a naturopath, but none are covered by my insurance and I just do not have the money available for uncovered care.

I think I have my intolerance's figured out..although I do want to have Alcat testing or Enterolab one day. Alcat may be covered by my insurance, haven't checked it out as of yet.

Have you tried pro-biotics and/ or natural yoghurt with a high bacilli count to get the gut healthy?

Oh yeah, probiotics kill my stomach. Being as sensitive as I am, I find if I just stick with the foods I know do not bother me, I do much better. I have a friend whom can not take probiotics either and neither of us can eat yogurt...both of us dairy intolerant. One day I may try to figure out how to make yogurt from my almond milk, but then still, you need some sort of culture to make the yogurt, and that seems to be the issue for us both. For some of us, the plainer the better..we do best without meds, probiotics, and such.

It will be 11 yrs gluten free for me in July. Over that 11 yrs I have learned so much about this old body of mine. I often times say I wish I had plain old celiac disease and not all these other issues.:pLife would be so much simpler for me then.

Life isn't so bad though. I am at a weight I haven't seen since I was 17, even wear a smaller size now than I did then. For now my fibro seems to be stable, and if I could get the fatigue under control, I would be much happier. As for the headaches, I have had them for so long, they seem like a daily part of my life now! Sad to say, isn't it?

So, how are you, do you have health issues too? Or have you told me? The memory isn't always so good either!:eek:
:hug:

Have you tried goat's milk instead. I think it can be a successful alternative.
Do you think that your fatigue is actually caused by an inadequate diet, in view of the gut problems that you have?
Can be hard to get the right balance (whatever that is!) with enough fats, minerals, enzymes etc.
I've just read a book called The Diet Delusion, and that was an eye opener on the history of dietary advice. So much that we are told is just wrong, unproven or liable to lead to obesity.
Also describes how refined carbs seem to leech vitamins out of the body. The bad guys are definitely refined carbs, no doubts at all. Been known for a long time but it upsets the big companies so it gets no traction.
See if your library has it.

My ailments are mostly to do with a worn spine, so I get lots of pain in my neck, shoulders and lower back. This PC work is the worst!!! My shoulder just burns after just a few minutes of it.
I'm trying to minimise my pain meds and stay on the simple stuff, but I often need just a bit more. Usually I'll put up with it but then can't do anything as I just don't feel good.
No treatment for a worn spine, just pain meds or death!!! Trying the first one....

I'm happy to hear you made the right choice!!!:DOnce when I asked a customer how he was doing, he said to me, "Well, I'm just happy to be looking down at the daisys instead of pushing them up!" I use that line often!:wink:

I will do a search at our library for that book, if not there, maybe in Amazon. I find often times you can buy used books in Amazon for next to nothing and I have never received one that didn't look like new.

My back has been givign me problems as of late, my neck/shoulder area all the time. Sometimes when I am sitting here, I keep an ice pack on my neck (I keep this rice filled pad in my freezer)..I find ice and/or heat work the same for me, just depends on how I am feeling at the moment as to which one I use.

The only carbs in my diet are in my veggies and nuts and they are very low in carbs and good carbs at that. For the foods I have left that I can eat, they are all very healthy. I eat no sugar other than the natural sugars in fruits, only use stevia for sweetener, make my own almond or walnut butter, my own almond milk..actually I feel I am eating healthier than I ever have. Thankfully, I do not get bored with my food. That's not saying I never miss the things I can't have. As sick as I get when I eat something I can't have, it's enough to keep me from touching any of those foods.

After being so sick from the meds, I haven't even tried taking an ibuprofen for pain. When I walk, my neck/shoulders scream, my knees ache, and my feet cry, yet I just keep telling myself this is my medicine and I must do it for my health.:D

Thanks for your comments everyone...im still in limbo-land awaiting an MRI (insurance approval) before I can move on with finding out whats wrong. More and more im convinced its MS and my doctors even wrote on my charts (could be MS/possible MS) which scares the ever-livin out of me! I also have recently gotten vertigo/blurry vision/and shooting pain thru my head and neck which makes me think even more that theres something serious going on. I was just curious Deb I know you mentioned you were sugar free so does that mean you are using sugar free products (like artificial sugar)? If you are then I defintely think your symptoms could be coming from that. You should look up Aspartame poisening its really interesting how it relates to so many neurological/physical ailments and can rid you of a lot of them if you stop using products with the fake sugars in them. But anyways thanks for the comments and please please keep me in your prayers that its not MS. :)

Absolutely not, never again. I use Stevia, brand Truvia for now. I am growing my own stevia, won't know until fall how I do with it. I gave up all artificial sweeteners. I honestly feel they were keeping me from losing weight. The only thing that changed when I gave up the sweetener was the weight loss.

I won't touch sweaters except stevia which I like quite a bit.

Avoid all unnatural and processed sugars, including HFCS

Advertising is everything. People believe the ads on tv and in magazines, they just do not understand, these ads are put out by the industry that grows that crop, of course they are going to say it's fine for us. Like the stupid commercials that say "your body doesn't know the difference between cane sugar and corn sweeteners." Of course our bodies don't know the difference, it's all garbage. Same as the dairy industry telling people that dairy does a body good, that it actually helps you lose weight. All smoke and mirrors. Same goes for the soy industry, and I believe soy is one of the worst things we could put in our bodies, yet there are people whom think it's so healthy and that's because the soy growers tell them so. Everyone needs to listen to the people outside the industries, and hear the real truths about these products.

You have to be careful with stevia products too. Some of them actually have very little stevia in them. I am growing my own stevia this year, will see how that works!:p

I am on medication at this time. I chose not to do the vitamins and herbs that a fibro doctor that I went to see suggested. I wasn't interested at
the time. I will work through that option if I get worse.

I'm on gabapentin and a muscle relaxer at this time. And my other medications.

Donna:grouphug:

Beware anything in the media, especially in regards diet and health!
Do your own research.
Why are the advisory bodies ignoring tests that contradict their published views?
One doctor said it's because of: pride, profit or prejudice.
It's interesting to observe that since the demonising of animal fats, eggs and dairy, and the promotion of margarine, vegetable oils, grains and a low fat diet, that obesity and diabetes levels have sky rocketed.
Coincidence?
Western diets have been shown repeatedly to create health problems when there were none before, especially heart disease-there are numerous studies in people with high animal fat and little carbohydrate in their diets, who were very healthy but became ill as their diet changed. Main problems were obesity and heart disease.

So much media 'advice' comes from the wrong people, or subsidised by them. These lobbies are just too powerful to ignore or deal with, so they hold sway.
I'm currently reading Eat Fat, Lose fat, by Dr. Mary Enig.
Absolutely eye opening. This is a carefully researched book and I'd advise anyone interested in their health to read it, and find out what lies and deceptions have been, and still are, fed to us.
It goes through it all calmly and steadily and unravels the whole sorry mess.

On page 25, on the benefits of cholesterol (yes, it's essential) it says that low-cholesterol vegetarian diets can lead to leaky gut syndrome and other intestinal disorders. Cholesterol plays an important role in maintaining the health of the intestinal wall.
You should find this book in your library. It's a must read.

Thanks Peter, I will do a search for the book. I have been reading some very interesting books as of late too. One was called "Drug Muggers" , written by a pharmacist named Suzy Cohen...very interesting. The other day, I grabbed anotyher book called, ""Diabetes Without Drugs", also very intersting, that's when I realized it is written by the same pharmacist. She says all diabetes should go gluten free for their health and I do truly believe that also.

Doctors recommend so many meds, then they have to give other meds to counteract what the first meds are doing. It seems, often we are just torturing our bodies with all these meds when often times the first problem is our diet.

I don't exactly follow the diet's suggested in a book. I can't exactly keep
up with them. My body just doesn't like the way it wants to eat.

SO I have worked through my system looking for the things that attack my
body. And I've eliminated what I need to.

But as life would need to every once in a while its thrown me a loop just
recently. And I've had to adjust again.

Donna:grouphug:

Yes, so true.
Doctors seem to be either reluctant or unable to include diet in their work.
Drugs, on the other hand.....

Dr Carolyn Dean talks about a cure for leaky gut.
http://drcarolyndean.com/