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April 26, 2021
Meet Jean: Navigating life with complex chronic conditions
By Manage My Pain User, Jean
Jean continues to find ways to persevere and share her story despite being diagnosed with a number of complex pain conditions
Jean has Ehlers-Danlos Syndrome (EDS) and uses the Manage My Pain app to help her keep track of her medications to manage her chronic conditions. She has had difficulty in the past trying to communicate her complex conditions to doctors and specialists. However, she refuses to give up and wants to help normalize the conversation around pain.
Read her story below.
Tell us about yourself
I have Ehlers-Danlos Syndrome (EDS). I have got Type 3 which is Hypermobility, with some symptoms of Type 4 which is vascular – so basically it affects everything from the top of my head to the tips of my toes inside and outside. It is a progressive, degenerative condition meaning it will only get worse as I get older.
Although EDS is not technically terminal, it does have serious impacts on the vascular system. The blood vessels and the organs are weaker than normal, so a hard knock, that would normally just give you a bad bruise, could rupture and result in death. Bleeding also lasts longer as it takes longer to form clots, which makes it take much longer for my wounds to heal. For me, a paper cut takes 20 minutes for it to stop bleeding and I can still have a scab there 3 weeks later. You are also more susceptible to having a stroke if you have vascular EDS.
When did you first start experiencing pain?
I can not remember a time when I have not had pain somewhere, but it got worse when puberty hit. Although it is a genetic condition, and although I have had it since birth, I was 27 when I was officially diagnosed. Pain is my most debilitating symptom followed very closely by my chronic fatigue, but they are not my only issues.
People with chronic fatigue syndrome will often go through the fatigue cycle. We have good times and bad times. You can have a couple of days you go to bed normally and you wake up fully rested. However, there are other days where you go to bed at 10 pm, and then not wake up until the afternoon the following day. Then you are so exhausted by 7 pm, that you need a nap, or you sleep, and you do not wake up again until 6 am the next morning. At its worst – the longest I have slept for is 56 hours. This cycle can last for months so you cannot do anything because even when you are awake you are exhausted. I will sometimes be awake for one day then sleep for the next two. I can often be bed-bound for months at a time as well.
On top of that, you have the problems of pain that you deal with quite a lot. The pain means that it is difficult to get comfortable to fall asleep before something starts hurting. My partner helps me re-orient myself and then tries to help me get to sleep, but then 20 minutes later you can be up again. It can be like that all night through, and that means that my partner does not sleep much and must sleep during the day to catch up.
How did your pain evolve?
I was diagnosed with health issues when I was 13 while I was battling with pain all my life. When I told my doctors that my pain was physical, they would usually respond, "Oh no, there’s nothing wrong with you - it’s all psychosomatic. We’ve done all these tests and we can’t find anything."
It is never just one thing that is wrong and it takes a really experienced doctor (in my case 2 rheumatologists) to actually link all these individual issues together under one umbrella diagnosis. Before my EDS diagnosis, I was suffering from all the following which were all being treated as separate issues:
· Depression
· Dependent Personality Disorder
· Irritable Bowel Syndrome
· No periods over the course of 8 years
· Low blood pressure
· Perthes’ disease
· Chronic stress headaches
· Several urinary tract infections (as a child at least once a year)
· Unexplained nose bleeds and bruising
· Lack of balance
· Lactose intolerant
· Pre-cancerous cervical cells
· Dizzy spells
· Lack of concentration
I still have all these issues but now they are effectively managed as part of a single illness rather than as lots of individual conditions.
Read her story below.
Tell us about yourself
I have Ehlers-Danlos Syndrome (EDS). I have got Type 3 which is Hypermobility, with some symptoms of Type 4 which is vascular – so basically it affects everything from the top of my head to the tips of my toes inside and outside. It is a progressive, degenerative condition meaning it will only get worse as I get older.
Although EDS is not technically terminal, it does have serious impacts on the vascular system. The blood vessels and the organs are weaker than normal, so a hard knock, that would normally just give you a bad bruise, could rupture and result in death. Bleeding also lasts longer as it takes longer to form clots, which makes it take much longer for my wounds to heal. For me, a paper cut takes 20 minutes for it to stop bleeding and I can still have a scab there 3 weeks later. You are also more susceptible to having a stroke if you have vascular EDS.
When did you first start experiencing pain?
I can not remember a time when I have not had pain somewhere, but it got worse when puberty hit. Although it is a genetic condition, and although I have had it since birth, I was 27 when I was officially diagnosed. Pain is my most debilitating symptom followed very closely by my chronic fatigue, but they are not my only issues.
People with chronic fatigue syndrome will often go through the fatigue cycle. We have good times and bad times. You can have a couple of days you go to bed normally and you wake up fully rested. However, there are other days where you go to bed at 10 pm, and then not wake up until the afternoon the following day. Then you are so exhausted by 7 pm, that you need a nap, or you sleep, and you do not wake up again until 6 am the next morning. At its worst – the longest I have slept for is 56 hours. This cycle can last for months so you cannot do anything because even when you are awake you are exhausted. I will sometimes be awake for one day then sleep for the next two. I can often be bed-bound for months at a time as well.
On top of that, you have the problems of pain that you deal with quite a lot. The pain means that it is difficult to get comfortable to fall asleep before something starts hurting. My partner helps me re-orient myself and then tries to help me get to sleep, but then 20 minutes later you can be up again. It can be like that all night through, and that means that my partner does not sleep much and must sleep during the day to catch up.
How did your pain evolve?
I was diagnosed with health issues when I was 13 while I was battling with pain all my life. When I told my doctors that my pain was physical, they would usually respond, "Oh no, there’s nothing wrong with you - it’s all psychosomatic. We’ve done all these tests and we can’t find anything."
It is never just one thing that is wrong and it takes a really experienced doctor (in my case 2 rheumatologists) to actually link all these individual issues together under one umbrella diagnosis. Before my EDS diagnosis, I was suffering from all the following which were all being treated as separate issues:
· Depression
· Dependent Personality Disorder
· Irritable Bowel Syndrome
· No periods over the course of 8 years
· Low blood pressure
· Perthes’ disease
· Chronic stress headaches
· Several urinary tract infections (as a child at least once a year)
· Unexplained nose bleeds and bruising
· Lack of balance
· Lactose intolerant
· Pre-cancerous cervical cells
· Dizzy spells
· Lack of concentration
I still have all these issues but now they are effectively managed as part of a single illness rather than as lots of individual conditions.
I want to be the kind of person that can help others and try to make a difference, even if it is just one person’s life that I could save.
What were the impacts on your physical and mental health because of the lack of diagnosis?
During my teens, I became very depressed, very anxious, and I became anorexic because that was the only thing that I could control. I could not make people understand why I was hurting so I thought that if I was starving myself, then I could understand why I was hurting. Your stomach hurts when you get hungry, so that was my way of controlling what was going on and it was easy. It took ages for my mum to get me out of bed so I could say that I was not hungry at breakfast time, or that I would grab something from the shop on the way to school.
In school, I would tell them that I was not hungry because and I had a big breakfast. When I got home, I told my parents that I was not hungry because I had had a big lunch at school. It took 6 months before anyone realized what was happening. I lost 4 stone (25kg) so they forced me to start eating, and because of that, I started finding other methods of self-harm.
I started drinking and although my stepdad was not a big drinker, he had a bottle of whisky at Christmas. I would drink the whisky and dilute it with water, so it still looked full. I had heard stories of self-harmers cutting themselves and getting carted off to hospital so what I would do was to get a fork and stab myself just so it looked like I had a spot that I had scratched. It caused the pain and did what it needed it to do.
Eventually, when I was about 18, I tried to kill myself for the first time where I drank a bottle of bleach. By that time, I was diagnosed as having a dependent personality disorder, because I was barely functioning, and I could not do anything without my mother being around. As soon as she went out of the house, I would get terrified. If she was one minute late home I would be chasing her and asking her where she was. I was frantic. I needed to know where she was all the time.
There are certain things that you should teach a child as they grow, and she never taught me those things, so she never told me how to do the cooking, the cleaning, how to make a cup of tea. I was taught how to do that by a psychiatric hospital. She did not give me the basic skills and psychiatrists said that it was because she could not cope with not being needed. As much as she did not want me to be sick, she needed to be needed, she was keeping me mentally ill so that she was always needed.
I was told I had Munchausen syndrome, and making up my conditions, so when I had a baby at 23, social services took her 12 weeks after she was born. I fought for 2 years but lost and she was adopted in 2005. When I finally received my diagnosis, in 2008 I was successfully able to appeal the fact that Social Services had not assessed me or treated me as a disabled parent. If they had assessed me as a disabled parent, then I may have been able to keep her. I would have been given the necessary support that I was denied at the time so where I was told that if I was not capable of doing those things on my own, then I was not a fit mother and I could not keep her.
Due to not having the proper diagnosis, I was not given a physical needs assessment. Even though I had an orthopedic surgeon who had written to them, and said that there were things wrong with me, they just ignored his letter. All I get is letterbox contact twice a year. She is now almost 11 – I must wait until she is 18 to wait to see if I can have any chance of possibly seeing her.
How did you find Manage My Pain and has it helped?
I have found MMP very helpful, especially in trying to work out what exasperates or intensifies my symptoms and also try to work out what causes a flare-up.
It is also very helpful to show my medication management doctors to be able to prove I am using my medication effectively and as prescribed and discussed. I take a high number of opioids (One doctor told me he can do six Appendicitis operations on what I take in a single day and that is without including my breakthrough pain meds) and it was a long hard fight to get them as I was suicidal and overdosed on medication more than once in my youth before I received a proper diagnosis.
What have you tried to manage your pain?
I have tried everything from pilates to acupuncture and every medication the doctors have thrown at me. Nothing has completely removed the pain but with the right combination of medication, I am able to have some quality of life.
The app has been especially useful in this tracking when the medication regime I am on is starting to lose its effectiveness. This also enables the doctors to see where and what type of pain I am experiencing the worst so that they can evaluate and suggest a new medication regime with more data.
Understanding how they all interrelate has made it easier to manage my condition as I can see how a flare-up in one can cause problems in another. This has allowed me to plan properly to mitigate problems from these issues. For example, using a wheelchair reduces the risk of falling due to lack of balance which in turn reduces the risks of developing bruises that I cannot explain or bleeding uncontrollably.
Any inspirational tips to help others who might be looking for help as well?
I cannot help the fact that I am ill – but that does not mean that I must just sit in bed all day and give up. I want to be the kind of person that can help others and try to make a difference, even if it is just one person’s life that I could save. I want to take the necessary steps to make sure they do not have the problems that I have had in the past. If I can change one person’s life for the better, then I have done something worthwhile.
During my teens, I became very depressed, very anxious, and I became anorexic because that was the only thing that I could control. I could not make people understand why I was hurting so I thought that if I was starving myself, then I could understand why I was hurting. Your stomach hurts when you get hungry, so that was my way of controlling what was going on and it was easy. It took ages for my mum to get me out of bed so I could say that I was not hungry at breakfast time, or that I would grab something from the shop on the way to school.
In school, I would tell them that I was not hungry because and I had a big breakfast. When I got home, I told my parents that I was not hungry because I had had a big lunch at school. It took 6 months before anyone realized what was happening. I lost 4 stone (25kg) so they forced me to start eating, and because of that, I started finding other methods of self-harm.
I started drinking and although my stepdad was not a big drinker, he had a bottle of whisky at Christmas. I would drink the whisky and dilute it with water, so it still looked full. I had heard stories of self-harmers cutting themselves and getting carted off to hospital so what I would do was to get a fork and stab myself just so it looked like I had a spot that I had scratched. It caused the pain and did what it needed it to do.
Eventually, when I was about 18, I tried to kill myself for the first time where I drank a bottle of bleach. By that time, I was diagnosed as having a dependent personality disorder, because I was barely functioning, and I could not do anything without my mother being around. As soon as she went out of the house, I would get terrified. If she was one minute late home I would be chasing her and asking her where she was. I was frantic. I needed to know where she was all the time.
There are certain things that you should teach a child as they grow, and she never taught me those things, so she never told me how to do the cooking, the cleaning, how to make a cup of tea. I was taught how to do that by a psychiatric hospital. She did not give me the basic skills and psychiatrists said that it was because she could not cope with not being needed. As much as she did not want me to be sick, she needed to be needed, she was keeping me mentally ill so that she was always needed.
I was told I had Munchausen syndrome, and making up my conditions, so when I had a baby at 23, social services took her 12 weeks after she was born. I fought for 2 years but lost and she was adopted in 2005. When I finally received my diagnosis, in 2008 I was successfully able to appeal the fact that Social Services had not assessed me or treated me as a disabled parent. If they had assessed me as a disabled parent, then I may have been able to keep her. I would have been given the necessary support that I was denied at the time so where I was told that if I was not capable of doing those things on my own, then I was not a fit mother and I could not keep her.
Due to not having the proper diagnosis, I was not given a physical needs assessment. Even though I had an orthopedic surgeon who had written to them, and said that there were things wrong with me, they just ignored his letter. All I get is letterbox contact twice a year. She is now almost 11 – I must wait until she is 18 to wait to see if I can have any chance of possibly seeing her.
How did you find Manage My Pain and has it helped?
I have found MMP very helpful, especially in trying to work out what exasperates or intensifies my symptoms and also try to work out what causes a flare-up.
It is also very helpful to show my medication management doctors to be able to prove I am using my medication effectively and as prescribed and discussed. I take a high number of opioids (One doctor told me he can do six Appendicitis operations on what I take in a single day and that is without including my breakthrough pain meds) and it was a long hard fight to get them as I was suicidal and overdosed on medication more than once in my youth before I received a proper diagnosis.
What have you tried to manage your pain?
I have tried everything from pilates to acupuncture and every medication the doctors have thrown at me. Nothing has completely removed the pain but with the right combination of medication, I am able to have some quality of life.
The app has been especially useful in this tracking when the medication regime I am on is starting to lose its effectiveness. This also enables the doctors to see where and what type of pain I am experiencing the worst so that they can evaluate and suggest a new medication regime with more data.
Understanding how they all interrelate has made it easier to manage my condition as I can see how a flare-up in one can cause problems in another. This has allowed me to plan properly to mitigate problems from these issues. For example, using a wheelchair reduces the risk of falling due to lack of balance which in turn reduces the risks of developing bruises that I cannot explain or bleeding uncontrollably.
Any inspirational tips to help others who might be looking for help as well?
I cannot help the fact that I am ill – but that does not mean that I must just sit in bed all day and give up. I want to be the kind of person that can help others and try to make a difference, even if it is just one person’s life that I could save. I want to take the necessary steps to make sure they do not have the problems that I have had in the past. If I can change one person’s life for the better, then I have done something worthwhile.
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