In our clinic, we have had the unique opportunity to observe hundreds and hundreds of patients with the same diagnoses. Our patients rarely suffer from just one specific condition, genetic or otherwise.
There is a reason for this. When you go to your doctor, these conditions may be addressed, but typically, they will be treated as separate and often unrelated to your main diagnosis. However, remember—your body is a whole, not an engine made of separate parts. Every part affects every other part.
Because of the complexity of the dysfunctional nervous system responsible for the symptoms of EDS/POTS, you will often suffer from other conditions and symptoms also related to the same dysfunctional nervous system.
Other Conditions associated with EDS/POTS –
Below you will find a list of conditions that are either known to be associated with POTS/EDS or reported by Spero Clinic as having been observed several times in our EDS/POTS patient base.
Fibromyalgia is a painful, chronic disorder characterized by widespread musculoskeletal pain accompanied by fatigue, brain fog, sleep, memory, and mood issues. Fibromyalgia is thought to be the result of central sensitization, which describes changes in the central and peripheral nervous system that increase sensitivity to painful and non-painful stimuli.
The problems often observed in patients with hypermobility also make them more likely to suffer from pain in their joints. Central sensitization is thought to amplify this pain.
Many patients with EDS, POTS, and HSD also have fibromyalgia. They are not the same disorder, but they do seem to have a lot in common. Many patients with hypermobility describe chronic generalized pain and fatigue. In addition, fibromyalgia seems to be linked to dysautonomia, just like POTS and EDS. In fact, one recent study found that there is such a high incidence of fibromyalgia in HEDS patients that these patients should routinely be monitored for fibromyalgia in order to rule it out.2
AMPS is a condition characterized by chronic pain in the muscles, joints, or other parts of the body without any underlying injury or obvious source of inflammation. This condition is often misdiagnosed and underdiagnosed, and patients who suffer from it will sometimes be misdiagnosed as suffering from psychiatric and/or psychological issues.
Pain associated with AMPS may be widespread or localized to an individual area of the body. AMPS is often misdiagnosed as fibromyalgia or full-body CRPS.
Long COVID occurs when symptoms and dysfunction persist long after an initial COVID infection. There are more than two hundred symptoms associated with long COVID, including nerve pain, pseudo-seizures, debilitating fatigue, brain fog, depression, and memory loss. The first genome-wide hunt to find genetic risk factors for long COVID has yielded a hit: a DNA sequence near a gene called FOXP4, which is active in specific immune cells and lungs.63
However, we have noticed a high incidence of long COVID in EDS patients. Dr. Philip Bull and Dr. Alan Hakim, in partnership with long COVID advocate Gez Medinger, are conducting new research (at the time of the writing of this book) looking at whether GJH may be a risk factor in adults for certain chronic symptoms in long COVID. The initial findings of the study found that GJH was more common than might be expected in people with long COVID. It has also been linked to the development of POTS in many patients.4 It is my hypothesis that a patient’s specific vulnerabilities may set them up to develop long-term symptoms following a COVID infection.
Functional neurologic disorder (FND) is also known as conversion disorder or functional neurologic symptom disorder. It refers to a group of common neurological movement disorders caused by an abnormality in how the brain functions.
The exact cause of FND is unknown. It has been shown to have a higher incidence in the EDS patient population5, something that, Dr. Katinka first became aware of due to encountering it in her patient population.
Symptoms of FND include movement disorders, dystonia (where a limb is stuck in an abnormal position), functional seizures, tics (similar to those associated with Tourette’s syndrome), periods of unresponsiveness, functional tremors, functional weakness, functional paralysis, functional facial spasm, functional vision disorders, and speech disorders.
“Chiari malformation” is a term for a condition in which your brain tissue extends into your spinal canal. In other words, part of your brain (the cerebellum) at the back of your skull bulges through a normal opening in your skull where it joins the spinal canal. This puts pressure on parts of your brain and spinal cord and can cause mild to severe symptoms.
Symptoms of Chiari malformation may include headaches (especially after sudden coughing, sneezing, or straining), balance problems, hearing problems, neck pain, dizziness, numbness, muscle weakness, ringing in the ears (tinnitus), difficulty swallowing, vertigo, sensitivity to light and sound, poor gait, and poor hand-eye coordination. Arnold Chiari has been linked to POTS and EDS (especially HEDS).
MALS can cause severe pain so intense that patients often become afraid of eating, resulting in significant weight loss. In addition, MALS patients will find exercise and certain positions painful (often relieved by bending forward). It may also cause diarrhea, vomiting, nausea, and bloating; MALS has a higher occurrence in the EDS/POTS patient population.6
Mast cell activation syndrome is a condition in which patients experience repeated episodes of the symptoms of anaphylaxis—allergic symptoms such as hives, itching, anxiety, shortness of breath, swelling, low blood pressure, difficulty breathing, and severe diarrhea. It is commonly accepted that patients with EDS/POTS more often suffer from MCAS than other people.
Small fiber sensory neuropathy (SFN) is a neuromuscular disorder that affects millions of people. It can be caused by various conditions, such as diabetes or prediabetes. It can also occur on its own. It occurs when damage to the peripheral nerves predominantly or entirely affects the small myelinated or unmyelinated fibers. The main symptoms of SNF are primarily sensory in nature and include (usually in the feet or hands) tingling in the feet, numbing of the skin’s ability to feel temperature, sharp electric shock pains, inability to feel pain, or pain signals randomly sent even when there is no trigger. Therefore, it can be challenging to get a SFN diagnosis.
SFN is common in patients who have EDS. If it is not treated, it has the potential to affect other nerves in the body as well. A rule of thumb that holds true is that if there is localized inflammation in a body part (or parts), there is global inflammation present also. One typically does not exist without the other. While conventional wisdom holds that SFN is not treatable, Dr. Katinka strongly disagrees. Because of our success in treating neurologic pain, we have also started to treat SFN in patients using a combination of neurologic rehabilitation, decreasing inflammation, and encouraging nerve healing. This approach is proving to be extremely successful.
Ehlers-danlos Syndrome (EDS) is also often associated with acquired connective tissue disorders (e.g., lupus and rheumatoid arthritis) or autoimmune rheumatologic conditions, according to the National Center for Biotechnology Information.7
References:
1. Stoler JM, Oaklander AL. Patients with Ehlers Danlos syndrome and CRPS: a possible association?. Pain. 2006;123(1-2):204-209. doi:10.1016/j.pain.2006.02.022
2. Fairweather D, Bruno KA, Darakjin AA, Bruce BK, Gehin JM, Kotha A, Jain A, Peng Z, HIdge DO, Rozen TD, Munipalli B, Rivera FA, Malavet PA and Knight DRT (2023) High overlap in patients diagnosed with hypermobile Ehlers-Danlos syndrome or hypermobile spectrum disorders with fibromyalgia and 40 self-reported symptoms and comorbidities. Front. Med. 10:1096180. Doi: 10.3389/fmed.2023.1096180
3. Lammi, V. et al. Preprint at medRxiv https://doi.org/10.1101/2023.06.29.23292056 (2023).
4. Nisticò V, Iacono A, Goeta D, et al. Hypermobile spectrum disorders symptoms in patients with functional neurological disorders and autism spectrum disorders: A preliminary study. Front Psychiatry. 2022;13:943098. Published 2022 Aug 24. doi:10.3389/fpsyt.2022.943098
5. Huynh DTK, Shamash K, Burch M, et al. Median Arcuate Ligament Syndrome and Its Associated Conditions. The American SurgeonTM. 2019;85(10):1162-1165. doi:10.1177/000313481908501019
6. Mallick D, Goyal L, Chourasia P, Zapata MR, Yashi K, Surani S. COVID-19 Induced Postural Orthostatic Tachycardia Syndrome (POTS): A Review. Cureus. 2023;15(3):e36955. Published 2023 Mar 31. doi:10.7759/cureus.36955
7. Rodgers KR, Gui J, Dinulos MB, Chou RC. Ehlers-Danlos syndrome hypermobility type is associated with rheumatic diseases. Sci Rep. 2017 Jan 4;7:39636. doi: 10.1038/srep39636. PMID: 28051109; PMCID: PMC5209734.
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