fibrodude84
Senior Member
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- 191
I was diagnosed with fibromyalgia but my major symptom is severe fatigue. I have the other problems too but I can accept the pain if I just wasnt so weak and dizzy.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I was diagnosed with fibromyalgia but my major symptom is severe fatigue. I have the other problems too but I can accept the pain if I just wasnt so weak and dizzy.
Both definitions require additional symptoms in the neurological, autonomic, endocrine, and immune domains. You can read the ICC or CCC to see if you fit those definitions.A. Postexertional neuroimmune exhaustion (PENE pen’-e): Compulsory
This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are as follows:
1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
2. Postexertional symptom exacerbation:e.g.acute flu-like symptoms, pain and worsening of other symptoms.
3. Postexertional exhaustion may occur immediately after activity or be delayed by hours or days.
4. Recovery period is prolonged, usually taking 24 h or longer. A relapse can last days, weeks or longer.
5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.
I always feel like I got hit by a truck and am so exhausted.
POTS is where most of the Post-Exertional Malaise , Fatigue and Neurological/Cognitive issues comes from..
Same here. PEM is entirely different from fatigue or exercise intolerance. OI made it hard for me to do a lot of things, but it wasn't the cause of PEM. Even after I got the OI under control and could do a lot more routine stuff without fatigue and light-headedness, the PEM still hits after the fact by several days if I exceed my threshold. The PEM is not just excessive fatigue. It's more like having a really, really bad flu.I personally dont agree with that statement. For myself POTS doesnt give me post exertional malaise (by that Im refering to the kind which kicks in long after one has stopped doing activity). POTS tends to hit immeditately, it is the ME which gives the post exertional symptoms which come in later on.
That happens to a lot of us. One reason is that some of us don't have the most common form of POTS, or we have other types of OI entirely, so it doesn't show up on the basic POTS tests. One problem is that some of us have delayed symptoms, so if they don't test for long enough they don't catch it.I was seen by an ENT who did a tilt test and he said I was fine. Something is very wrong though.
OI can be chronic. It doesn't just happen when you stand. Lots of us have OI symptoms sitting, and some even lying down. For example, many people with ME have low blood volume, which can cause problems all the time. One rough way to check for low blood volume -- it's not a perfect test, but it might give you a clue -- is to measure your first morning BP. If your pulse pressure (systolic-diastolic) is less than 30, and certainly if it's less than 25, you might have low blood volume.The thing is I don't think it's OI because it's chronic and not just getting up but sitting too. I just feel off balance.
I don't even know if it's worth dropping so much money on an expert to find out if it's CFS, fibro or both because the treatment is the same and barely any at that. It would be nice to know though what the hell is wrong with me.
Lyrica, Savella, physical therapy, and exercise are treatments for fibro, not for ME. Antivirals, abx, and immune modulators are treatments for ME, but not fibro. I'm sure there are lots of overlaps in treatment. I'm no medical expert. The best way to find out the treatment differences are to do some internet research and/or talk to expert (biomedical) clinicians for both illnesses.@SOC
I have both. How are the treatments different. Anti viral use? Interesting. I didn't know this.
The thing is I don't think it's OI because it's chronic and not just getting up but sitting too. I just feel off balance.
@SOC What did you mean if your BP is less than 30 or 25 than you could have low blood volume? Do you mean subtracting one number from the other or some other way to track it?