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.