Pandadarling - I suspect that mental illness usually occurs as a reaction to having a misunderstood condition like CFS. Difficult to know what comes first. For me my mental health was ok before my physical symptoms surfaced, in fact I was happier than I had been for a long time. Over time having persistent nausea and other physical symptoms has taken its toll on my mental health. I have lost all of my confidence especially in trusting my body and am very low as I watch my life slowly disintegrate in front of me. Still hoping for a miracle....
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- Thread starter hipha
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@hipha So sorry to hear that :[
I think taking care of our mental health when dealing with chronic physical illnesses like CFS/ME is something we should all be made aware off - and offered support with - especially if you are not used to experiencing mental health problems. Can you find a local mental health support group? If you check on MIND's website they often list them. I found one in my local area run by MIND and it has been wonderful and uplifting to meet people who are likeminded and it gets me out of the house and to be sociable for a couple of hours a week
I think taking care of our mental health when dealing with chronic physical illnesses like CFS/ME is something we should all be made aware off - and offered support with - especially if you are not used to experiencing mental health problems. Can you find a local mental health support group? If you check on MIND's website they often list them. I found one in my local area run by MIND and it has been wonderful and uplifting to meet people who are likeminded and it gets me out of the house and to be sociable for a couple of hours a week
I agree but mental health services in the UK are in meltdown and priority is (rightly)given to people who are a danger to themselves or others. The responsibility then falls on the GP to provide the support and unfortunately many GPs are not experienced or sympathetic towards mental health and do not consider its impact alongside long term chronic illness like CFS. You are fortunate to have a good local mind service as their service is patchy which reflects how much money each centre can raise locally. I waited 3 months for counselling and was still at the back of the queue. My wife had debilitating CFS for 7 years (1992 - 1999) and has recovered although has never regained her full strength. Not sure how she recovered but had started a series of homepathic powders so there is always hope. We think that her CFS was triggered by glandular fever.
- Messages
- 93
- Location
- UK
@hipha I'm glad she found a path to recovery.
I completely empathise with the shite services for mental health in the uk. I had to wait two years for therapy and was in a bad way. But it's like you said. Unless you are a threat they don't take you seriously. I was suicidal but because my methods weren't like jumping of a bridge you arnt seen as a threat to others and they leave you to it once you are out of A&E. It's madness! Luckily I'm a lot more stable now though.
I completely empathise with the shite services for mental health in the uk. I had to wait two years for therapy and was in a bad way. But it's like you said. Unless you are a threat they don't take you seriously. I was suicidal but because my methods weren't like jumping of a bridge you arnt seen as a threat to others and they leave you to it once you are out of A&E. It's madness! Luckily I'm a lot more stable now though.
I think people with mental illness should be offered support for it. And people with ME should be offered support for their ME symptoms and related disability.
If someone offered me mental health support while I don't have mental illness, and am not being treated for my ME diagnosis, I'd be pretty ticked off. Especially since there is no indication that mental illness is any more prevalent in ME patients than in the general population, and/or in comparison to any other groups with chronic illness. The only studies which find increased rates of mental illness rely on using extremely inappropriate questionnaires, where physical symptoms are presumed to be indicative of mental illness, and actual diagnostic thresholds are often ignored in favor of score comparisons to healthy people.
I'm glad you're getting the help you need, but the presumption that every ME patient should automatically be offered the same support, regardless of need for it, does not make any sense. Especially when a lot of psychological "support" in the ME field is currently comprised of trying to convince us that we are not really ill and we can slowly exercise our way to good health.
- Messages
- 93
- Location
- UK
Sorry if you misunderstood me. I mean if the ME patient is experiencing things like depression then they should offer it. The original post was about a lady concerned that she may be depressed. It should be known that with such a huge change in your life you may need some counselling and not to feel bad to ask for it. Same as if someone passed away etc. Big changes to our lives can cause mental ill health. That's all I meant.
Hi,
I'm so sorry if I sounded unsure about your symptoms.....for I don't know you at all, and I am not a diagnostician in any way. My 2 cents is worth just about that, perhaps less!
I can only speak with some knowledge about my own experience. In my case, it appears I had a neurotoxic reaction to antidepressants coupled with a high dose of a beta blocker. I had neurological symptoms for two years (Parkinson's and a brain tumor were considered, for I had a benign brain tumor in the past). Just at the time my negative results came in, I went into a hypertensive crisis.....I recovered slowly. My tremors and loss of balance disappeared. I was not depressed, but I felt unwell. I was sure I would recover, joined a new gym, and got back to work.
Several months after that I was walloped with a slew of symptoms....I had no idea what was happening. I was excessively thirsty, my eyes dried up, and my hair began falling out. I had severe GERD (for the first time), my large intestine sort of froze, and I could only eat very small portions of very bland food. I lost a lot of weight. My extremities were tingling (pain came later) and I had palpitations. I had anxiety that defied description, and severe depression. I also had severe insomnia and night sweats. I could not bear heat of any kind. I was overwhelmingly fatigued. I discovered "dysautonomia" on the web. I could not work and exhausted my sick leave (I am now on employer disability).
I went to a very skeptical neurologist...who felt I could not have dysautonomia because I did not have low blood pressure...I finally had two small fiber biopsies and both were positive: they indicate wide-spread nerve damage. I also saw a great psychiatrist/neurologist who felt there was something neurologically odd going on.... The voice of the skeptic shook when he called with the biopsy results.... In addition, I just found out last week I have nerve damage in my eyes. Scary.
I recently saw a celebrated dysautonomia specialist here in NYC. Had a lot of tests for autoimmune disorders. He thinks the neurotoxicity story makes the most sense....(nothing in the AD lot about this). He thinks I will recover, albeit very slowly. He told me to MOVE!
My digestion and dry eye are better. My skin is softer. My sleep is interrupted, but I do sleep. Yet I now have real neuropathic pain.
In spite of my fear of antidepressants, I am taking a tiny dose of Nortriptyline. My depression is palpable, but lifting. I also take a tiny dose of Klonopin to sleep.
I am still very fatigued and have palpitations with any movement. I'm seeing a cardiologist soon. I also had an endoscopy and met with a rheumatologist. I have a masseuse/yoga teacher come to my house....she is just wonderful. I am also planning to start PT. I want to now gently work out 5X/wk. Very difficult!
So, you see, this long list of symptoms is to demonstrate how systemic this "catchall" disorder is. Even my fingernails are affected. I happen to have a history of depression, but I read its incidence is no higher in the dysautonomia population than the overall population. Anxiety is a real problem for everyone with this....because the sympathetic and parasympathetic nervous systems (flight, fight, and resolution) are deregulated.
Dysautonomia, as you correctly note, is a catchall term. It is rare, but seen among diabetics and people with underlying immune disorders. Certain antibiotics, statins, and other toxins can set it off....so can physical trauma. I do see there is comparatively a lot of it in the ME population. I'm not sure if it is comorbid, or if people are misdiagnosed. I just joined this forum because it speaks to me now. I am heavily grieving the loss of my profession and health....I became basically bedbound and worry a lot about the effects of deconditioning.
I can only suggest you see someone who understands the variations of this disorder (no easy task...I am in NYC and had to wait five months to see the specialist!) and get checked. In spite of my history, I would like further immunological testing...for this variant can be treated.
So, I truly wish you the best. I can only say be very persistent in locating a good doctor...My psychiatrist/neurologist actually spoke on the phone with me twice before we met. He is a staunch advocate with the others!
Here's wishing both of us a better new year!
Aviva
I'm so sorry if I sounded unsure about your symptoms.....for I don't know you at all, and I am not a diagnostician in any way. My 2 cents is worth just about that, perhaps less!
I can only speak with some knowledge about my own experience. In my case, it appears I had a neurotoxic reaction to antidepressants coupled with a high dose of a beta blocker. I had neurological symptoms for two years (Parkinson's and a brain tumor were considered, for I had a benign brain tumor in the past). Just at the time my negative results came in, I went into a hypertensive crisis.....I recovered slowly. My tremors and loss of balance disappeared. I was not depressed, but I felt unwell. I was sure I would recover, joined a new gym, and got back to work.
Several months after that I was walloped with a slew of symptoms....I had no idea what was happening. I was excessively thirsty, my eyes dried up, and my hair began falling out. I had severe GERD (for the first time), my large intestine sort of froze, and I could only eat very small portions of very bland food. I lost a lot of weight. My extremities were tingling (pain came later) and I had palpitations. I had anxiety that defied description, and severe depression. I also had severe insomnia and night sweats. I could not bear heat of any kind. I was overwhelmingly fatigued. I discovered "dysautonomia" on the web. I could not work and exhausted my sick leave (I am now on employer disability).
I went to a very skeptical neurologist...who felt I could not have dysautonomia because I did not have low blood pressure...I finally had two small fiber biopsies and both were positive: they indicate wide-spread nerve damage. I also saw a great psychiatrist/neurologist who felt there was something neurologically odd going on.... The voice of the skeptic shook when he called with the biopsy results.... In addition, I just found out last week I have nerve damage in my eyes. Scary.
I recently saw a celebrated dysautonomia specialist here in NYC. Had a lot of tests for autoimmune disorders. He thinks the neurotoxicity story makes the most sense....(nothing in the AD lot about this). He thinks I will recover, albeit very slowly. He told me to MOVE!
My digestion and dry eye are better. My skin is softer. My sleep is interrupted, but I do sleep. Yet I now have real neuropathic pain.
In spite of my fear of antidepressants, I am taking a tiny dose of Nortriptyline. My depression is palpable, but lifting. I also take a tiny dose of Klonopin to sleep.
I am still very fatigued and have palpitations with any movement. I'm seeing a cardiologist soon. I also had an endoscopy and met with a rheumatologist. I have a masseuse/yoga teacher come to my house....she is just wonderful. I am also planning to start PT. I want to now gently work out 5X/wk. Very difficult!
So, you see, this long list of symptoms is to demonstrate how systemic this "catchall" disorder is. Even my fingernails are affected. I happen to have a history of depression, but I read its incidence is no higher in the dysautonomia population than the overall population. Anxiety is a real problem for everyone with this....because the sympathetic and parasympathetic nervous systems (flight, fight, and resolution) are deregulated.
Dysautonomia, as you correctly note, is a catchall term. It is rare, but seen among diabetics and people with underlying immune disorders. Certain antibiotics, statins, and other toxins can set it off....so can physical trauma. I do see there is comparatively a lot of it in the ME population. I'm not sure if it is comorbid, or if people are misdiagnosed. I just joined this forum because it speaks to me now. I am heavily grieving the loss of my profession and health....I became basically bedbound and worry a lot about the effects of deconditioning.
I can only suggest you see someone who understands the variations of this disorder (no easy task...I am in NYC and had to wait five months to see the specialist!) and get checked. In spite of my history, I would like further immunological testing...for this variant can be treated.
So, I truly wish you the best. I can only say be very persistent in locating a good doctor...My psychiatrist/neurologist actually spoke on the phone with me twice before we met. He is a staunch advocate with the others!
Here's wishing both of us a better new year!
Aviva
Just a note: CFS/ME is not a condition covered by the "dysautonomia, umbrella" because it is not now considered to be a disorder of the autonomic nervous system. However, there are people diagnosed with ME who also have autonomic system disorders. It's not clear if these are comorbid , or if ME is misdiagnosed.
Thank you for your detailed response aviva. I am so sorry to hear of your ongoing illness which sounds awful. The worse part is losing your sense of purpose and self respect. Family is also a major stress for me as they simply do not understand how I can be ill with perfect test results. My mother, son and father in law have all recently had anxiety episodes bordering on panic and each as responded immediately to SSRI drugs and are now 'cured'. I suppose that I am desperate to have a diagnosis that is not simply a symptom of an underlying disease or functional problem (like anxiety). I fear that I will not find a specialist in my area and then am relying on luck to find a specialist in the uk. There does seem to be a much better understanding of Dysautonomia conditions in the US, Canada, Australia and NZ. I had an interesting exchange of emails with a doctor in Aus who specialises in Dysautonomia conditions. His theory is that Toll Like Receptors are a major cause of this condition which trigger a protective autoimmune reaction through inflammation whenever a threat is sensed. His name is Graham Exelby. He is sure that I have a form of Dysautonomia but I am not sure how he can diagnose this without seeing me. He recommended some tests including thyroid antibodies, PCR faeces (blastocystis or dientamoeba bugs) and homocysteine for genetic susceptibility. My thyroid result is 'within range' and my GP does not know what the other tests are.
Dear Hipha,
I understand your frustration....it is maddening to have symptoms with no known cause. However, I listed all my symptoms to give you a better idea of this disorder: most notably it involves small fiber nerves throughout the body....resulting in deregulation of many systems...digestion being but one.
I've never heard of the doctor you mentioned, but I am highly suspicious of anyone suggesting you have dysautonomia without examining you. I have never heard of his theories (might be my ignorance but I am getting familiar with the literature) and I do know nothing can be learned from a stool sample!
For dysautonomia can be an effect of many different processes and disorders: such as neurotoxic substances, diabetes, head trauma, and autoimmune diseases, but it is not infectious.
It can only be diagnosed through specific tests that measure autonomic responses and/ or, as in my case, through examining the nerves themselves through biopsy (I noted my ophthalmologist also saw such damage in my eyes).
It is a rare disorder...difficult to diagnose, and extremely difficult to live with. Again, I encourage you to read the material on DINET.
You do need answers, no doubt. If you feel you have dysautonomia, there are places to be tested in England. There is a thread right now on DINET's discussion forum about a testing center in London people are pleased with. DINET is a really good starting point for you....
Best,
A
I understand your frustration....it is maddening to have symptoms with no known cause. However, I listed all my symptoms to give you a better idea of this disorder: most notably it involves small fiber nerves throughout the body....resulting in deregulation of many systems...digestion being but one.
I've never heard of the doctor you mentioned, but I am highly suspicious of anyone suggesting you have dysautonomia without examining you. I have never heard of his theories (might be my ignorance but I am getting familiar with the literature) and I do know nothing can be learned from a stool sample!
For dysautonomia can be an effect of many different processes and disorders: such as neurotoxic substances, diabetes, head trauma, and autoimmune diseases, but it is not infectious.
It can only be diagnosed through specific tests that measure autonomic responses and/ or, as in my case, through examining the nerves themselves through biopsy (I noted my ophthalmologist also saw such damage in my eyes).
It is a rare disorder...difficult to diagnose, and extremely difficult to live with. Again, I encourage you to read the material on DINET.
You do need answers, no doubt. If you feel you have dysautonomia, there are places to be tested in England. There is a thread right now on DINET's discussion forum about a testing center in London people are pleased with. DINET is a really good starting point for you....
Best,
A