Friday, 3 August 2012

FM v M.E., what's the difference?

Last year I was diagnosed with Fibromyalgia. My previous GP had sent me to a rheumatologist, desperately seeking a specialist we could use to write me a statement for the DWP, as they would not accept anything written by him. The rheumatologist I saw was confused as to why I was referred to her, despite my explaining that there were no M.E. specialists in our area. My GP had hoped she would either be able to help or refer me further afield. (He eventually did this himself, as we know from previous blog posts). I only had one appointment with this rheumatologist. She diagnosed me with both Fibromylagia (FM) and hypermobility, and referred me for physiotherapy. She didn't explain to me what either condition means. My question ever since seeing her has been "What is the difference between FM and M.E.". No one, until today, has been able to give me an answer. I have several friends (all in the UK) who have the diagnosis of both, but none of them know the difference, and all identify most with the diagnosis they received first.

Today, a friend in the US, pointed me towards this page.
"A lot of people - even doctors - want to lump fibromyalgia (FM) and chronic fatigue syndrome (CFS/ME) together, believing they're different manifestations of the same underlying problem. [...]

Similarities Between FM & CFS/ME

  • Pain
  • Fatigue
  • Sleep disorders
  • Irritable bowel syndrome symptoms
  • Chronic headaches
  • Association with Temporomandibular Joint Syndrome (TMJ)
  • Cognitive or memory impairment
  • Dizziness
  • Impaired coordination

[...] When you look deeper, you discover that FM is linked to pain states such as hyperalgesia (pain amplification) and allodynia (pain from a typically non-painful source). CFS/ME, meanwhile, is associated with muscle aches like what you get with the flu. Also, not everyone with CFS/ME has pain.

[...] research shows that people with CFS/ME have unique fatigue states. The same has not been found about FM, and not everyone with FM has fatigue.

The types of unrefreshing sleep are vastly different, as well. People with CFS/ME may sleep most of the time, yet never feel rested. So far, researchers have been unable to identify any actual sleep disorders in CFS/ME, but they have found abnormal sleep patterns. FM, on the other hand, is generally characterized by one or more recognized sleep disorders as well as abnormal sleep rhythms. In many, the sleep disorders pre-date FM. Generally, those with FM get very little sleep.

When it comes to exercise, which causes symptom flares or "crashes" in both conditions, studies link the reaction to different physiological processes, including low growth hormone in FM and abnormal heart rhythms and lactic acid processing in CFS/ME.

The presence of central sensitization puts these conditions in the same overall category, but it's not unique to these illnesses.

Differences Between FM & CFS/ME

One key difference, when it comes to a diagnosis, is which symptom is worst, pain or fatigue. The diagnosis could also be influenced by whether your doctor is more familiar with the American College of Rheumatology's criteria for FM or the CDC's guidelines for CFS/ME.

However, experts have found some significant differences.

  • Greater immune dysfunction in CFS/ME
  • Abnormal nerve response in FM
  • Stress-system (HPA axis) abnormalities predominantly from the adrenal glands in CFS/ME and the hypothalamus in FM
  • FM patients have abnormal levels of a cellular chemical called substance P (which transmits pain signals), this level appears to be normal in CFS/ME patients.
  • CFS/ME patients often have high levels of a cellular antiviral enzyme called RNase L, while the level is normal in FM patients.
  • CFS/ME diagnostic criteria include low-grade fever and sore throat, FM criteria do not.
  • The onset of FM frequently is traced to a physical or emotional trauma. The pain of FM usually gets better with heat and massage, while CFS/ME pain doesn't.
  • Elevated pro-inflammatory cytokines in CFS/ME, and sometimes elevated anti-inflammatory cytokines in FM.
  • FM has generally not been connected with viral and bacterial infections (with a few exceptions, such as mycoplasma and parvovirus B19)
  • CFS/ME has occurred in epidemics, but none have been reported for FM
  • FM is not thought to ever be progressive or life-threatening (as CFS/ME can be in rare cases)
  • FM does not usually cause severe immune dysfunction, neurological symptoms and exercise intolerance
  • CFS/ME usually does not cause allodynia (exaggerated response to pain: non-painful stimuli experienced as painful)
  • Diagnosis of FM requires tender points (painful areas in the muscle that occur in certain places)
  • CFS/ME tends to begin after flu-like symptoms and may be linked to a virus
  • CFS/ME patients often have high levels of a cellular antiviral enzyme called RNase L, while the level is normal in FM patients
  • CFS/ME diagnostic criteria include low-grade fever and sore throat, while FM criteria do not
  • People with FM have tender points and abnormal levels of a cellular chemical called substance P (which transmits pain signals), and this level appears to be normal in those with CFS/ME
  • Meanwhile, the onset of FM frequently is traced to a physical or emotional trauma. The pain of FM gets better with heat and massage, while the pain of CFS/ME does not."

I am interested to read at the beginning of the page that many doctors lump FM and M.E. together, believing they stem from the same cause. Every time I talked to anyone about the difference between FM and M.E. I was hearing that the two conditions have the same symptoms, and onset even seems to be similar; as such I had also come to the conclusion that they were one and the same.

I think, but cannot tell for certain, that this website may be American. The reason I say this is that my experience has been that when I suggest to doctors and other medical professionals that FM and M.E. are the same condition they react very negatively. Since being diagnosed with FM, medical professionals have taken me more seriously than they previously did; they tend to dismiss my diagnosis of M.E., but pay attention to FM. My understanding is that in the US, they are given about equal attention, though unfortunately both being dismissed by many medical professionals. I believe medical opinion of M.E. in the UK is far more negative than that of FM, because of the affect Dr Wessely has had, whereas the profession in the US has not had that influence. Wessely has not given the same attention to FM that he has to M.E., which may be why FM is taken more seriously. And may be why doctors look at me derisively when I ask if the two conditions are one and the same.

As the article suggests, I honestly do get very confused when trying to describe the pain I experience. A friend of mine recently asked me to describe FM pain to her because she is concerned she is developing it on top of her M.E.. I struggle with hypermobility pain, sciatica, other back pain, M.E. pain, and supposedly FM pain, and I honestly cannot tell you which is which a lot of the time.

I've experienced quite extreme pain for as long as I can remember. As a teenager I struggled with pain in my joints and throughout my legs, sometimes my arms too. The pain in my legs was sometimes so severe that I could not walk. I learnt many years later that the pain in my legs and arms was because of problems with my back. I learnt last year that the pain in my joints is due to being hypermobile. Both were dismissed by medical professionals as being growing pains. If you read further into the FM/CFS/ME Resources website you read of many patients with FM being told by medical professionals that they don't have any clinical signs of pain. This has lead me to wonder whether I actually had FM or M.E. many years before they hit me properly.

I had concluded months ago that the rheumatologist was incorrect to diagnose me with FM. The reason for this was that she seemed to do so upon hearing that I had pain in muscles. She seemed unaware of what tender points were and did not ask me about them. Plus she seemed to simply dismiss M.E. as irrelevant. I did not think that half an hours consultation was adequate for diagnosing something as severe, with such implications, as FM. Having read this document I now believe I am correct. I do not think I have FM. I cannot indicate tender points for the pain I have. I would describe it as being in my muscles, feeling like the bone is bruised. Sometimes it hits the exact same spots in my muscles; I can hit that spot, as if to give myself a dead leg / arm, and the pain will go temporarily. Other times the pain will simply radiate around the muscles. I had previously thought that TMJ (Temporomandibular Joint Syndrome) was only associated with FM. I have it, as such it was in my mind, my only connection to FM, but now having read that people with M.E. suffer it also, I shall dismiss that thought. Finally, the rheumatologist did not test for abnormal nerve response, did not test my cellular substance P levels, did not test for elevated anti-inflammatory cytokines, etc etc.

My conclusion is that I will be taking this document to my new GP and asking them to remove the diagnosis of FM from my records. While it has had be taken more seriously, had me receive medication that is helping me which I would not otherwise have received, and probably would have the DWP taking me more seriously, if it turns out that FM and M.E. are completely different conditions at some point in the future, I would rather that my medical records were accurate. I would also like to show the 'system' that I am not a hypochondriac collecting diagnoses.

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