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.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.
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.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.
Hi 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.
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
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;
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:
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).
- 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
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.
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).
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:
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.
- 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.
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.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.