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Discussion Starter #1
Does anyone have a diagnosis of CFS and think you may also have symptoms of Lupus? I got CFS in 1998 and was diagnosed in 2003 from a CFS specialist. He's had some patients end up with Lupus on top of CFS.

Just was wondering if anyone has CFS?

CindyLou
 

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I've moved your post to a different section that is a little more relevant and will hopefully get you some more responses.

Technically, you can no longer have a CFS diagnosis if you subsequently get a lupus diagnosis (unless they've changed things recently). I had the opposite experience where I developed CFS type symptoms (sore throat, headache, extra fatigue,etc.) *after* my lupus diagnosis. While trying to figure it all out saw a doctor who thought it could/would have been CFS but couldnt' get that dx with lupus already diagnosed. Anyways, in my case, it turned out I had Lyme. I do feel as if I have improved following my treatment for that last year.

I hope others will come along that have also had a CFS diagnosis though to provide you with their experience.
 

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Discussion Starter #3
Maia--reply about CFS

I still don't have a Lupus diagnosis. But the rheumy was pointing towards Lupus because of my rash. That's why I was wondering how other CFS people have made out. I have the orthosatic intoleance and low blood volume that does not happen with Lupus.

CindyLou
 

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Postie,

In some people it takes awhile for the blood tests to reveal lupus or scleroderma or other similar diseases. By awhile I mean it could be over several years. Often people will get a diagnosis of Fibromyalgia and/or CFS because the doctors don't find "evidence" of a connective tissue disease. The other thing that happens is people get dumped into a Fibromyalgia and/or CFS diagnosis out of ignorance on the part of doctors. Which is a shame because both of them are real conditions.

It maybe that you have an overlap syndrome and your other symptoms relate to another CTD. For instance I have Lupus overlap with Scleroderma plus RA and I also have Fibromyalgia. There are symptoms I have that are specific to Scleroderma or they are more common in Sclerop. Hopefully some of the other members who have dealt with CFS will be along in the next day or two to respond. You might also do a search of this section for CFS and see what you find in older posts.

Hope this helps.

Take care,
Karen
 

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Hi not sure if this will be helpful or not.. I was diagnosed with undifferentiated connective tissue disease 2 years ago. All bloods were negative but had joint pain and capillary vasculitis which had happened about 3 times and was told it was flea bites/allergic reaction. Twelve months later had extreme fatigue but no other symptoms, paid to see a rheum privately who diagnosed cfs. All bloods again were negative but he just said showed how unhelpful blood results were. I think its a very grey area when lupus/ctd causes you to have extreme fatigue. Im not sure how they manage to separate the two.
Debs
 

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Just for reference of anyone reading this who is in doubt of their CFS diagnosis I thought I would place a reference to guidelines for diagnosing CFS albeit guidelines established in my country 6 yrs ago.

http://www.mja.com.au/public/guides/cfs/cfs2text.html

Diagnosis

CFS is diagnosed on clinical grounds. It relies on the presence of characteristic symptoms (see Box B), and the exclusion of alternative medical and psychiatric diagnoses. In individual patients, the symptoms of CFS may overlap with other common syndromes such as fibromyalgia and irritable-bowel syndrome, and the primary diagnosis will depend on which symptoms are the most dominant and disabling. People with CFS often have concurrent depression, and this need not exclude the diagnosis.
As similar symptoms can also occur in a range of other disorders (eg, thyroid disease, anaemia, major depression), the first priority in clinical assessment is to exclude alternative explanations. This can be achieved by careful history-taking, physical examination and a restricted set of laboratory investigations.


B: Diagnostic criteria for chronic fatigue syndrome
1. Fatigue
Clinically evaluated, unexplained, persistent or relapsing fatigue persistent for six months or more, that:
  • is of new or definite onset;
  • is not the result of ongoing exertion;
  • is not substantially alleviated by rest;
  • results in substantial reduction in previous levels of occupational, educational, social or personal activities;
and
2. Other symptoms
Four or more of the following symptoms that are concurrent, persistent for six months or more and which did not predate the fatigue:
  • Impaired short term memory or concentration
  • Sore throat
  • Tender cervical or axillary lymph nodes
  • Muscle pain
  • Multi-joint pain without arthritis
  • Headaches of a new type, pattern, or severity
  • Unrefreshing sleep
  • Post-exertional malaise lasting more than 24 hours
Clinical historyIt is important to take careful note of the character of the fatigue. In people with CFS, fatigue is typically exacerbated by relatively minor physical or mental activity, and is associated with a protracted recovery period lasting hours or days. The fatigue should be differentiated specifically from weakness (neuromuscular disease), dyspnoea and effort intolerance (cardiac or respiratory disease), somnolence (primary sleep disorders), and loss of motivation and pleasure (major depression).
Additional clues which could point to alternative diagnoses include unexplained weight loss (occult infection, malignancy, thyrotoxicosis, Crohn's disease); dry skin and cold intolerance (hypothyroidism); snoring and daytime sleepiness (sleep apnoea); risk factors for transmission of blood-borne infections (HIV, hepatitis C); prior episodes of depression or anxiety (vulnerability to psychiatric disorder); arthralgia or rash (connective tissue disease); and prescribed or illicit drug misuse. A history of altered bowel habit may indicate an underlying gastrointestinal infection (eg, giardiasis), coeliac disease, thyroid disease, or inflammatory bowel disease.

Examination
Characteristically, there are no abnormal physical findings in people with CFS. The physical examination and mental state examination are therefore primarily directed towards excluding other disorders. A careful assessment for neurological deficits or signs of anaemia, cardiac failure, respiratory disease, hidden infection, connective tissue disease or tumour should be conducted. The presence of persistent fever, lymphadenopathy, or enlargement of the liver or spleen are not features of CFS and always warrant further investigation.
The behavioural signs of psychiatric disorder should also be sought, including psychomotor slowing (major depression), physiological arousal (anxiety states and panic disorder) and cognitive deficits (delirium or dementia).

Investigation
There are currently no validated laboratory tests to confirm the diagnosis of CFS, assess its severity or monitor progress. Hence, the purpose of laboratory investigation is to help exclude other disorders.
Recommended screening investigations are:
  • full blood count and erythrocyte sedimentation rate;
  • serum electrolyte, calcium and creatinine levels;
  • biochemical liver function tests;
  • thyroid function tests (TSH); and
  • urinalysis for blood, protein and glucose.
Additional investigations should be ordered only if the history or examination plausibly suggests other diagnoses (eg, autoimmune connective tissue disease, coeliac disease), or if abnormalities are found in the screening investigations. Routine analysis of immune function (lymphocyte subsets, immunoglobulin levels), infectious disease serology, or environmental toxins are not recommended.



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Lily
 

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Discussion Starter #7
Hi Karen

raggedyann1;507219 said:
Postie,

In some people it takes awhile for the blood tests to reveal lupus or scleroderma or other similar diseases. By awhile I mean it could be over several years. Often people will get a diagnosis of Fibromyalgia and/or CFS because the doctors don't find "evidence" of a connective tissue disease. The other thing that happens is people get dumped into a Fibromyalgia and/or CFS diagnosis out of ignorance on the part of doctors. Which is a shame because both of them are real conditions.

It maybe that you have an overlap syndrome and your other symptoms relate to another CTD. For instance I have Lupus overlap with Scleroderma plus RA and I also have Fibromyalgia. There are symptoms I have that are specific to Scleroderma or they are more common in Sclerop. Hopefully some of the other members who have dealt with CFS will be along in the next day or two to respond. You might also do a search of this section for CFS and see what you find in older posts.

Hope this helps.

Take care,
Karen
Your reply is very helpful. My Rheumy and Hematologist both had told me it could even take 10 years for bloodwork to even show positive. You're correct in saying that's why we are diagnosed with CFS or Fibro is because we have the symptoms of those but nothing in labwork. I was diagnosed by Dr. Bell who travels all over world and is a researcher for CFS. He has helped me tremendously to learn about CFS.
All I know is from 1998 to now, my labwork is starting to change. That's why I'm up to date on labs and seeing about symptoms of lupus because I never know.
CindyLou
 

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Discussion Starter #8
Deb

Debsm;507239 said:
Hi not sure if this will be helpful or not.. I was diagnosed with undifferentiated connective tissue disease 2 years ago. All bloods were negative but had joint pain and capillary vasculitis which had happened about 3 times and was told it was flea bites/allergic reaction. Twelve months later had extreme fatigue but no other symptoms, paid to see a rheum privately who diagnosed cfs. All bloods again were negative but he just said showed how unhelpful blood results were. I think its a very grey area when lupus/ctd causes you to have extreme fatigue. Im not sure how they manage to separate the two.
Debs
What is capillay vasculitis? I have marks on my ankles that are like purple red and I think my first rheumy said it was vasculitis but can't remember. When I became sick in 1998 I had extreme and severe fatigue, where I couldn't get off the couch. My platelets went way out of whack and my white count plummeted to 1.9. I was having bloodwork 3 times every week. I had to get a bone marrow aspirate done since they thought I had leukemia. My ANA showed positive from day one and it was always 160 or 320 but now is 680. The rash on my face and neck and chest I've had since I got sick and my white count usually stayed 2something to 3 and now is 2.1. That's why the rheumy is seeing me just once a year because I still get bloodwork through my regular doctor throughout the year. So I really didn't think I need to see the rheumy right now more than what I do.
CindyLou
 

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Discussion Starter #9
Lily

Lily;507243 said:
Just for reference of anyone reading this who is in doubt of their CFS diagnosis I thought I would place a reference to guidelines for diagnosing CFS albeit guidelines established in my country 6 yrs ago.

http://www.mja.com.au/public/guides/cfs/cfs2text.html

Diagnosis

CFS is diagnosed on clinical grounds. It relies on the presence of characteristic symptoms (see Box B), and the exclusion of alternative medical and psychiatric diagnoses. In individual patients, the symptoms of CFS may overlap with other common syndromes such as fibromyalgia and irritable-bowel syndrome, and the primary diagnosis will depend on which symptoms are the most dominant and disabling. People with CFS often have concurrent depression, and this need not exclude the diagnosis.
As similar symptoms can also occur in a range of other disorders (eg, thyroid disease, anaemia, major depression), the first priority in clinical assessment is to exclude alternative explanations. This can be achieved by careful history-taking, physical examination and a restricted set of laboratory investigations.


B: Diagnostic criteria for chronic fatigue syndrome
1. Fatigue
Clinically evaluated, unexplained, persistent or relapsing fatigue persistent for six months or more, that:
  • is of new or definite onset;
  • is not the result of ongoing exertion;
  • is not substantially alleviated by rest;
  • results in substantial reduction in previous levels of occupational, educational, social or personal activities;
and
2. Other symptoms
Four or more of the following symptoms that are concurrent, persistent for six months or more and which did not predate the fatigue:
  • Impaired short term memory or concentration
  • Sore throat
  • Tender cervical or axillary lymph nodes
  • Muscle pain
  • Multi-joint pain without arthritis
  • Headaches of a new type, pattern, or severity
  • Unrefreshing sleep
  • Post-exertional malaise lasting more than 24 hours
Clinical historyIt is important to take careful note of the character of the fatigue. In people with CFS, fatigue is typically exacerbated by relatively minor physical or mental activity, and is associated with a protracted recovery period lasting hours or days. The fatigue should be differentiated specifically from weakness (neuromuscular disease), dyspnoea and effort intolerance (cardiac or respiratory disease), somnolence (primary sleep disorders), and loss of motivation and pleasure (major depression).
Additional clues which could point to alternative diagnoses include unexplained weight loss (occult infection, malignancy, thyrotoxicosis, Crohn's disease); dry skin and cold intolerance (hypothyroidism); snoring and daytime sleepiness (sleep apnoea); risk factors for transmission of blood-borne infections (HIV, hepatitis C); prior episodes of depression or anxiety (vulnerability to psychiatric disorder); arthralgia or rash (connective tissue disease); and prescribed or illicit drug misuse. A history of altered bowel habit may indicate an underlying gastrointestinal infection (eg, giardiasis), coeliac disease, thyroid disease, or inflammatory bowel disease.

Examination
Characteristically, there are no abnormal physical findings in people with CFS. The physical examination and mental state examination are therefore primarily directed towards excluding other disorders. A careful assessment for neurological deficits or signs of anaemia, cardiac failure, respiratory disease, hidden infection, connective tissue disease or tumour should be conducted. The presence of persistent fever, lymphadenopathy, or enlargement of the liver or spleen are not features of CFS and always warrant further investigation.
The behavioural signs of psychiatric disorder should also be sought, including psychomotor slowing (major depression), physiological arousal (anxiety states and panic disorder) and cognitive deficits (delirium or dementia).

Investigation
There are currently no validated laboratory tests to confirm the diagnosis of CFS, assess its severity or monitor progress. Hence, the purpose of laboratory investigation is to help exclude other disorders.
Recommended screening investigations are:
  • full blood count and erythrocyte sedimentation rate;
  • serum electrolyte, calcium and creatinine levels;
  • biochemical liver function tests;
  • thyroid function tests (TSH); and
  • urinalysis for blood, protein and glucose.
Additional investigations should be ordered only if the history or examination plausibly suggests other diagnoses (eg, autoimmune connective tissue disease, coeliac disease), or if abnormalities are found in the screening investigations. Routine analysis of immune function (lymphocyte subsets, immunoglobulin levels), infectious disease serology, or environmental toxins are not recommended.



love
Lily
Hi Lily:
I know I have CFS because of OI and low blood volume. I don't believe you get them in Lupus? I also have the exertional malaise which I don't think happens with Lupus? But I have alot of symptoms also with Lupus so that's why I like to find out about people with CFS to see what has happened down the road with them?
CindyLou
 

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I do have orthostatic intolerance (actually officially diagnosed with a tilt table test years ago when I was part of a study as a "control subject"). Healthy people can have that I think too... at least that's what I was told as I thought I was more or less healthy at the time. When lupus affects the nervous system, any thing can go wrong with any part of the nervous system (central, peripheral, or autonomic).

Exertional fatigue happens with lupus too as far as I know. I certainly do not get that "exercise high" and higher energy anymore following something as simple as walking my dog for 30 minutes and it can definitely tire me out completely for 1-3 days if I overdo it one day.

In all liklihood, there are some people who initially were diagnosed with CFS but then went on to have other identifiable disorders responsible for their symptoms. You certainly from the start have had other symptoms (low white blood cell count, positive ANA for example) that were NOT consistent with CFS. It's a very good thing you are going back for a full workup at this point with even more symptoms pointing towards some sort of autoimmune connective tissue disease.

It seems very likely that you may have been misdiagnosed all these years, but still given the diagnosis that best fit your symptoms at the time with the knowledge of that time. Good luck - please write back and let us know what gets sorted out for you...

PS You may want to search the site for "CFS" and see what pops up and you may be able to find some others that have had this diagnosis and private messag them if they aren't popping by the site right now to read your post.
 

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Postie,a great deal of people that are dx with cfs, ctd, or fibro, wil have
that for several yrs, and some may stay with those diagnosis, and some get worse and go on to end up being dx with Lupus. Lupus is called the disease of 1,000 faces, cause thats how many diseases how many diseasesit can imitate, that is why it is so hard and takes so long to get a diagnoses. Keep a jopurnal.
 

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Discussion Starter #12
Maia

Hi and thanks for writing back. It sounds like so much of you and I are the same. You haven't been diagnosed with Lupus or have you?

I am so glad to hear from you. I was diagnosed with Orthostatic Intolerance from Dr. Bell. I don't know if you ever heard of him? He's a researcher for CFS and speaks around the world. He's wrote several books. At the time, he diagnosed me in 2003 I never really had major stuff and I went to him yearly and nothing ever changed. He is up by Niagara Falls so is almost 4 hours from here.

I have the same exertional fatigue as you do but I thought it only occurred in CFS? Thanks so much for your helpful answers. I felt better reading that and I'm glad you shared this. I understand that CFS is an exclusion area and things need to be ruled out. I also realize that you could have another disease under CFS because that's a syndrome because it's not one typical disease.
CindyLou
 

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Discussion Starter #13
Halfpint

halfpintfl;507290 said:
Postie,a great deal of people that are dx with cfs, ctd, or fibro, wil have
that for several yrs, and some may stay with those diagnosis, and some get worse and go on to end up being dx with Lupus. Lupus is called the disease of 1,000 faces, cause thats how many diseases how many diseasesit can imitate, that is why it is so hard and takes so long to get a diagnoses. Keep a jopurnal.
As you may notice, I got sick back in 1998 so it's been 10 yrs before my symptoms started changing. I don't know anything about Lupus. I'm glad people are writing me and helping me out. It's so helpful.

I also wanted to let everyone know that I did call my Rheumy's office this afternoon and he will be in tomorrow. They wrote down my messages and is giving it to my Rheumy along with the chart so when he comes in the morning then he will see it.

Since he has recent bloodwork and knows about my symptoms, I had asked him about the fevers. I said for the past week I have been getting fevers eveyday. She had asked me if I just get them in the day and I said yes. When I saw him 2 weeks ago, I didn't have them. The fevers come and go through the day and then they drop to normal and next day their back again. I told the receptionist to also tell him through my whole illness I've had fevers off and on. But at least I can have peace of mind and this way he'll know what's happening and can tell me what it is.

The temps range in anywhere's from over 100 degrees up to almost 103. Anywhere's from 100-102.something.

CindyLou
 

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Yes, I have been diagnosed with lupus over 6 years now. After my lupus diagnosis I develolped some symptoms that were more consistent with CFS but were later found out to be due to Lyme disease.

The one thing I've learned about going to specialists in a very specific area (like CFS) is that by going to them you're much more likely to get diagnosed with that if it fits somewhat. This can be both a blessing and a curse sometimes!

Stay in touch - we do sound a lot alike. Let us know how it turns out with this rheumatologist!

PS I was told to eat a lot of salt to treat my orthostatic intolerance ;) This by the Mayo Clinic researchers! :)
 
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