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Old 03-01-2007, 07:24 PM   #1
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CFS with unexplained or unusual symptoms

Has anyone been diagnosed with Chronic Fatigue Syndrome and has other unexplained symptoms or feels that CFS is a wrong diagnosis for them?

I have been diagnosed with CFS and have other muscle symptoms that are not explained under the CFS diagnosis. I am looking for other people that hopefully have the same condition as myself to talk to.

Thanks for your time,
Paris

 
Old 03-02-2007, 06:45 AM   #2
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Re: CFS with unexplained or unusual symptoms

What are the other symptoms? CFS can affect every bodily system as well as mental and cognitive function.

 
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Old 03-03-2007, 10:54 PM   #3
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Re: CFS with unexplained or unusual symptoms

Hi Ballady,
I have a lot of muscular symptoms. My muscles cramp, burn, fatigue and swell within minutes of use. My muscles partly sieze and my every movement feels like weight lifting. Movement can be so difficult, like I am dragging around a dead carcass. Rest makes it better. I am ridiculously strong for a sedentary person. I have strength but no endurance. I never gain any ground with this problem no matter what I do.

Any one else have this?
Paris

 
Old 03-04-2007, 03:22 AM   #4
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Re: CFS with unexplained or unusual symptoms

Parisean,

Fibromyalgia often goes hand in hand with CFS.

 
Old 03-05-2007, 12:11 AM   #5
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Re: CFS with unexplained or unusual symptoms

I have a friend who has fibro and so am familiar with it. I have been tested and do not have fibro. I also do not have a known muscle disease either. Since there is no explanation for my muscle symptoms, I am looking for other people with the same symptoms.
Thanks,
Paris

 
Old 03-14-2007, 09:31 AM   #6
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Re: CFS with unexplained or unusual symptoms

hi parisean,
have your doctors ever done any tests to determine if you're deficient in any vitamins or minerals? low magnesium (or i suppose high levels also) can cause muscular problems: cramping, burning etc. at your next appointment, bring it up and request that the tests be done. that would be an easy fix at least. good luck to you.

 
Old 03-14-2007, 10:49 AM   #7
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Re: CFS with unexplained or unusual symptoms

Hi Paris,

I was dx in 1992 with fibro and in 1993 was disabled. In was dx in 1994 with ME/CFS with TMJ (dx in 1992), balance problems, dizzy, chemical sensitivies, food intolerances, all types of allegries stuff I never had before. In Dec 2006 I was dx with MS. It was a shock to me because I would have never expected it. I saw my neuro after I didn't recognize my own son. He did a MRI looking for stroke or whatever. When it came back clear, I did a walking EEG test. It wasn't conclusive and was scheduled for another one but I told him about the double vision. From there it was a short two month journey to my MS dx. I had a lot of blood tests done, evoked potentials and spinal tap(LP).

[Note: In 1993 seeing my GP doctor my blood test came back with low white count and low phosperous level (rare). It causes bad muscle cramps. I had to take RX for it and it brought the levels back to normal. ]

My neuro didn't think it was it either but my tests and exams proved it. I was having over the years feet felt like they were burning, muscle cramps, burning, tingling, ankles swelling, leg weakness that I thought was just fatigue. I also have double vision and loss of vision that happened suddenly. I have bladder/bowel incont. I had some of these symptoms for years but never told my neuro because I assumed the were ME/CFS related.

I know I have still fibro and I still have symptoms of ME/CFS but now I have MS symptoms and sometimes it hard to tell which is which. I am now in physical therapy to help strengthen my muscles from probable progression.

I wished I told my doctor sooner about the bowel incont and double vision. But when you are told symptoms are from depression or it all in your head so many times, why bother. I might have been dx sooner and started treatment 8 years ago instead of Jan this year.

In MS, the nerves run to the muscles and if they are short-circuit, then the muscles doesn't respond right. MS isn't the only disease that does that. I am not saying you have MS or that you don't have MS. It is a hard disease to dx. If you aren't satisfied with your doctor, keep looking for answers. You know your body. Keep on pushing until you get the right dx. Keep a journal of your symptoms. Research your symptoms on the Internet.

I wish you the very best. I hope you find the right dx soon.

Bunni
dx 12/06 MS
Avonex, Klonopin, Flexeril

Last edited by tiredbunni; 03-14-2007 at 10:54 AM.

 
Old 03-14-2007, 04:29 PM   #8
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Re: CFS with unexplained or unusual symptoms

Hi Paris

I have not yet been diagnosed with CFS but have many of the symptoms that go hand in hand with the illness.
As I have mentioned in one of my previous posts my illness began with a swollen calf and ankle. I have had many tests taken on the leg itself these being: X-rays, Ultra Sounds and MRI scans but nothing 'abnormal' has been found. I have had this problem for almost a year now and the swelling of the calf and ankle increase and decrease throughout the day, no matter what activities I am doing. The leg is ALWAYS swollen no matter what! The swelling is also accompanied with discomfort. The pain travels throughout the whole of the leg, right from the foot to my hip. Everyday I experience pins and needles which lasts for several minutes before feeling is again gained. It is very frustrating.
At the moment I am still waiting for a diagnosis so I am afraid I cannot be much more help.
Believe me I know what your going through!

Take care

 
Old 03-27-2007, 11:25 PM   #9
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Re: CFS with unexplained or unusual symptoms

Hi Cala lily,
I have not been tested for nutritional deficiencies. However, I do take suppliments and read a lot about them. So I doubt that is the problem.
Thanks,
Paris

 
Old 03-27-2007, 11:33 PM   #10
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Re: CFS with unexplained or unusual symptoms

Hi Bunni,
Thanks for the reply.
Sounds like your diag road was pretty bad! Hope you are feeling better these days. Disability sucks, especially when you have no clue why and no one seems to care why.

I have been told I just had depression also. But somehow the symptoms didn't seem to fit and I was never satisfied with the diag. I have gone to doctor after doctor with little help. CFS is the only diag other than depression I can get now. I know there is more.

I do realize now that intense rest is probably the thing I need most and have neglected the best. So I will be embarking on a rest regimen now.

Paris

 
Old 03-27-2007, 11:40 PM   #11
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Re: CFS with unexplained or unusual symptoms

Hey Looie,
Sounds pretty bad. Have you looked into any kind of lymphatic condition or lymphatic parasites for the cause?
Also note, that moist heat, ie towel damp with very hot water, wrapped around your leg will help drain it and relieve pain.
Also try message. It can help work the fluid out of your legs.

Paris

 
Old 03-28-2007, 12:09 AM   #12
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Re: CFS with unexplained or unusual symptoms

Hello Parisean

Thanks for your reply. I am sure that I would have been tested for the lymphatic parasites that you mentioned as I have had MANY blood tests, checking for various problems. All blood results have came back as normal apart from a showing of Glandular Fever (Epstein Barr Virus) a few months back.

I was not aware that wrapping a hot moist towel around the leg would help with the swelling. I will defintely give it a go! I'm willing to try anything to hopefully see a result.

How is your situation these days?

Thanks again for the advice!

Keep in touch

Looie

Last edited by looie; 03-28-2007 at 12:11 AM. Reason: missing text

 
Old 03-29-2007, 12:07 AM   #13
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Re: CFS with unexplained or unusual symptoms

Hey again,
When a doctor does a blood test, it isn't for everything. There are hundreds of different things that can be tested for in the blood. Your Doc will only test for the most common things and sometimes for a rare thing if he thinks to test for it. Lymphatic parasites is kind of a rare thing.

Another thing to consider is whether you have some type of partial blockage of the blood vessels in the leg with the swelling, another rare thing. Is your blood pressure in both legs the same? He should have automatically taken your BP in both. Just thinking.

Me, well, I had a busy day. Tomorrow I will stay in bed and see if I can recover. I think if I take every other day off life to rest, maybe I can gain back some territory that fatigue has taken.

Gotta start being good to me.
Paris

 
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