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Ehlers-Danlos Support UK
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Lethargy

I have depression and Ehlers-Danlos syndrome, classical. I read something early this morning online about people are sometimes diagnosed wrongly with having hypochondriac or chronic fatigue syndrome or depression but really their problem is the Ehlers-Danlos syndrome so now I’m really wondering is what keeps me in bed day and night?Is it depression or is it my Ehlers-Danlos syndrome?I don’t cry a lot and I don’t feel extremely sad but I just can’t get out of bed I don’t like to leave my house I’m tired and I have no motivation so I’m just wondering if it’s only EDS or if it’s depression I’ve tried every depression medication there is and other treatments. So maybe the reason the depression medicine isn’t working is that maybe I’m not depressed Does anyone have any thoughts on this?

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I’ve got hyper mobility and about to be tested for EDS , I recently had to do the depression questionnaire which I scored extremely high in (I’m bedbound due the to pain in my hip) however I’m not actually depressed it’s just my situation that I’m in that is making me like this not depression and I had to explain that to them a lot lol

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Hi Ribby

I know that this is going to sound hard but you really need to try and move, in 2014 prior to formal diagnosis, I had completely ceased up and shuffled my way through my days, my body was just awful and my head was in a horrible place, the rheumatologist who diagnosed me could just advise me to pace myself and take breaks every 20 minutes and said if I liked I could take some pain relief, I didn't know whether I was happy to learn my flexible body had a new name and changed from being an advantage to me over the years to then cease up. I went home and extensively read up about this new condition and learnt more about what I was doing wrong with my body to try and stop me from taking my joints to the extreme in the hope this would help.

My muscles and joints were really so sore. I spoke to a nurse who advised I might benefit from soft tissue massage so I decided to give it a go even though it was an expense I would rather of not had to pay for, I rang a chiropractor who offered soft tissue massage and to my utter surprise was also a EDS sufferer and knew exactly what I was feeling, at my first appointment I had a gentle massage which hurt but I certainly benefitted from, but the underlying message from this chiropractor was that I needed to move much more every day even though it felt like my body might break. I started a series of very gentle stretching exercises, she supplied me with several sheets of stretching exercises to do at home. I felt reluctant at first though knew I had to give this a go, I was amazed that just a few simple stretching exercises could make a difference, over the coming weeks and months my life improved. I continued to see the chiropractor for several months, doing the stretches every day, I began to feel much better inside my head and body.

I stopped the messages because I felt I was dealing with myself much better, plus it was expensive, I now had moved from a shuffle crumpled up lady to a much better informed person who had a bit of an idea how to make myself feel a little better mentally and physically through stretching which enabled me to go out and have a bit of a life outside of my home.

Even though my body still hurts and my head is being looked at by neurology, I have Behcet's too which has several issues similar to EDS, I can get on with my life in a much better way than previously because I am more in tune with what is going on, what I was doing wrong and how I can help myself a little bit.

Really hope you can get some relief soon.

Gillian

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Huge hugs sweetheart. I'm so sorry you've been in a bad way. Yes heritable connective tissue disorder like EDS has a high association with depression.

Pharmaceuticals prescribed to treat depression have no scientific evidence or data that I'm aware of to support it's use. From my understanding, no-one knows what the inhibitors do, they just hope it's good. I was prescribed some and they made depression worse, much worse. I decided to just take it a day at a time and implement strategies by the grace of God to help.

Just be sure there's not something in your environment that's triggering you into depression. EDS is also closely associated with MCAS (mast cell activation syndrome). MCAS will also produce depression. Triggers include microbial contamination like mold, bacteria, virus. It's critically important those aren't in high concentrations in your home. Those with EDS are particularly sensitive and susceptible to microbes. Essentially mast cells are located within the connective tissue. When the connective tissue is faulty like in EDS that simply means your immune barrier is more easily breached. Microbes like mold attack the soft mucosal areas first, bang into the connective tissue. Mast cells degranulate and release inflammatory mediators like histamine. Histamine is a neurotransmitter! It transmits messages to and from the brain. Histamine is also in foods, it aides digestion. If you eat a good meal you naturally feel good and well. If you eat a bad meal, guilt and negative feelings occur. So when microbes also interfere in this pathway it affects the brain! Brain fog, depression, difficulties with cognitive function etc.

Make sure there are no signs of mold or water damage, leaking sinks, large collections of dust, clutter, old carpets ever wet, old wall paper, problems under dish washers etc.

I wish you wellness and success. If you have questions I'm happy to answer x

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Depression may make you feel you don't want to get out of bed but extreme fatigue makes you feel you can't. This fatigue is with you from the time you get up to the time you go to bed. It can give you brain fog, dizzy spells and affect your ability to concentrate. It can flare up other symptoms of EDS due to lack of exercise, poor sleeo routine, or regular meals (GERDS). It can also make you feel depressed if you are not sleeping enough. Depression makes you feel life is not worth living, or things will never get better, or there's no hope, where a person can have dark thoughts about life and who they are. It really depends what other symptoms you have as well as to whether it is just depression or because of EDS.

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There is also the relationship between depression and inflammation. If you have high levels of inflammation, or even low levels, this can affect the brain and cause depression like symptoms. This is an article about a recently published book on the subject:

nature.com/articles/d41586-...

and another psychologytoday.com/gb/blog...

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I agree with what Itsallinthehips said. I always wanted it on record that feelings of depression would be a non-issue if not for the other health problems that cause them. A body seemingly in the midst of deconstructing itself would trigger those kinds of feelings in any one. But, that isn't true depression. I felt I already had enough to deal with. I certainly wasn't interested in having a mental illness diagnosis slapped on me erroneously, which sadly they are always more than ready to do. Stand your ground if you know that classic depression symptoms are not what you suffer from. You don't want to be on those types of meds for any reason, in my opinion, particularly if they aren't improving anything.

You may want to Google Kelly Brogan, MD. She is a psychiatrist that now prescribes dietary and lifestyle changes to treat patients. She has put down her Rx pad for good and her patients are getting much better results. And these are healthy changes that can benefit everyone regardless of the diagnosis.

Best of luck to you.😊

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🤗🤗 Have you had your Vitamin D and Vitamin B12 tested? Vit D deficiency is common in EDS and is linked to low mood, and Vit B12 is linked to extreme tiredness. I take high dose Vit D which I buy myself as my GP is useless.😘

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Thank you. I take vitamin D 2,000 units a day. My PCP prescribes it so it’s pretty much free. My Vitamin D level is 48 which is acceptable. I tried taking B12 for a month or so. It made my ears ring and did not give me energy unfortunately. Thank you for the advice. I believe my antidepressants make me tired but I need them.

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