Is this why my health is so crappy?
Feb. 5th, 2003 02:57 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
baratronHellfire and damnation. I have yet another cold - sore throat, fever, etc. When I was talking on irc a couple of weeks ago about the cold I had then, and mentioned how frequently I have colds (every 2-3 weeks), someone said I should see my doctor. I said "But I've always been like this - I've always had at least one cold a month". He replied "Nevertheless, it's not normal". Now I have yet another cold from that one. My immune system is shot to pieces - I've known that for ages. I've been avoiding going to the doctor because they will probably want to do blood tests for HIV and leukaemia, and I hate having blood taken. I'm pretty sure it's not either of those conditions, because as I said, I've been like this for years - well before I was sexually active, for instance.
I remember when I was about 14 I had some sort of weird chronic fatigue thing that was never properly diagnosed. My short-term memory disappeared, I kept falling asleep in class despite getting enough sleep, and I had bad muscle pains. My doctor at the time thought it was ME, but didn't want to explicitly diagnose that because she said it wasn't a "useful" diagnosis. Essentially, even now, more than 10 years later, no one knows what causes ME and there is no real treatment for it.
Now, I know from a friend with ME/CFS is that it's like having flu all the time. So just now I decided to do a web search for the symptoms. And this is where the hellfire and damnation come into it. Here's a list of ME symptoms by the doctor who first reported the illness. Let's play the "How many of these do I have?" game. Things underlined are a yes, things in bold are a "Hell, yes!".
1. Fatigue (100%) - usually made worse by physical exertion.
2. Cognitive function problems (80%) - attention deficit disorder, calculation difficulties, memory disturbance, spatial disorientation, frequently saying the wrong word - Absolutely for the memory trouble. Since I've started being ill again, my short-term memory has gone to pot, as I've described recently.
3. Psychological problems (80%) - depression, anxiety, personality changes, usually a worsening of a previously mild tendency, emotional lability (mood swings). All of the above.
4. Other nervous system problems (100%) - sleep disturbance, headaches, changes in visual acuity, seizures, numb or tingling feelings, disequilibrium (?), lightheadedness - feeling "spaced out", frequent and unusual nightmares, difficulty moving your tongue to speak, ringing in ears, paralysis, severe muscle weakness, blackouts, intolerance of bright lights, intolerance of alcohol, alteration of taste, smell, hearing, non-restorative sleep, decreased libido, twitching muscles ("benign fasciculations").
5. Recurrent flu-like illnesses (75%) - often with chronic sore throat.
6. Painful lymph nodes - especially on sides of neck and under the arms(60%)
7. Severe nasal and other allergies - often worsening of previous mild problems (40%)
8. Weight changes - usually gain (70%)
9. Muscle and joint aches with tender "trigger points" or Fibromyalgia(65%)
10. Abdominal pain, diarrhea, nausea, intestinal gas - "irritable bowel syndrome (50%)
11. Low grade fevers or feeling hot often (70%)
12. Night sweats (40%)
13. Heart palpitations (40%)
14. Severe premenstrual syndrome - PMS (70% of women)
15. Rash of herpes simplex or shingles (20%)
16. Uncomfortable or recurrent urination - pain in prostate (20%) (well, this one would be a bit tricky for me).
17. Other symptoms: rashes, hair loss, impotence, chest pain, dry eyes and mouth, cough, TMJ syndrome, mitral valve prolapse, frequent canker sores, cold hands and feet, serious rhythm disturbances of the heart, carpal tunnel syndrome, pyriform muscle syndrome causing sciatica, thyroid inflammation, various cancers (a rare occurrence), periodontal (gum) disease, endometriosis, easily getting out of breath ("dyspnea on exertion"), symptoms worsened by extremes of temperature, multiple sensitivities to medicines, food and other substances.
Um. I know you're not supposed to use diagnostic criteria as a checklist, but - for God's sake - I have almost all of those! And I can't think of a single thing that's wrong with me that isn't on that list! I mean, honestly - every single one of my ailments is in the symptoms there.
Fuck.
I remember when I was about 14 I had some sort of weird chronic fatigue thing that was never properly diagnosed. My short-term memory disappeared, I kept falling asleep in class despite getting enough sleep, and I had bad muscle pains. My doctor at the time thought it was ME, but didn't want to explicitly diagnose that because she said it wasn't a "useful" diagnosis. Essentially, even now, more than 10 years later, no one knows what causes ME and there is no real treatment for it.
Now, I know from a friend with ME/CFS is that it's like having flu all the time. So just now I decided to do a web search for the symptoms. And this is where the hellfire and damnation come into it. Here's a list of ME symptoms by the doctor who first reported the illness. Let's play the "How many of these do I have?" game. Things underlined are a yes, things in bold are a "Hell, yes!".
1. Fatigue (100%) - usually made worse by physical exertion.
2. Cognitive function problems (80%) - attention deficit disorder, calculation difficulties, memory disturbance, spatial disorientation, frequently saying the wrong word - Absolutely for the memory trouble. Since I've started being ill again, my short-term memory has gone to pot, as I've described recently.
3. Psychological problems (80%) - depression, anxiety, personality changes, usually a worsening of a previously mild tendency, emotional lability (mood swings). All of the above.
4. Other nervous system problems (100%) - sleep disturbance, headaches, changes in visual acuity, seizures, numb or tingling feelings, disequilibrium (?), lightheadedness - feeling "spaced out", frequent and unusual nightmares, difficulty moving your tongue to speak, ringing in ears, paralysis, severe muscle weakness, blackouts, intolerance of bright lights, intolerance of alcohol, alteration of taste, smell, hearing, non-restorative sleep, decreased libido, twitching muscles ("benign fasciculations").
5. Recurrent flu-like illnesses (75%) - often with chronic sore throat.
6. Painful lymph nodes - especially on sides of neck and under the arms(60%)
7. Severe nasal and other allergies - often worsening of previous mild problems (40%)
8. Weight changes - usually gain (70%)
9. Muscle and joint aches with tender "trigger points" or Fibromyalgia(65%)
10. Abdominal pain, diarrhea, nausea, intestinal gas - "irritable bowel syndrome (50%)
11. Low grade fevers or feeling hot often (70%)
12. Night sweats (40%)
13. Heart palpitations (40%)
14. Severe premenstrual syndrome - PMS (70% of women)
15. Rash of herpes simplex or shingles (20%)
16. Uncomfortable or recurrent urination - pain in prostate (20%) (well, this one would be a bit tricky for me).
17. Other symptoms: rashes, hair loss, impotence, chest pain, dry eyes and mouth, cough, TMJ syndrome, mitral valve prolapse, frequent canker sores, cold hands and feet, serious rhythm disturbances of the heart, carpal tunnel syndrome, pyriform muscle syndrome causing sciatica, thyroid inflammation, various cancers (a rare occurrence), periodontal (gum) disease, endometriosis, easily getting out of breath ("dyspnea on exertion"), symptoms worsened by extremes of temperature, multiple sensitivities to medicines, food and other substances.
Um. I know you're not supposed to use diagnostic criteria as a checklist, but - for God's sake - I have almost all of those! And I can't think of a single thing that's wrong with me that isn't on that list! I mean, honestly - every single one of my ailments is in the symptoms there.
Fuck.
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no subject
Date: 2003-02-04 08:04 pm (UTC)It is just awful that you are going through this, but these symptoms are not exclusive to ME.
no subject
I had tests for rheumatological conditions back when I was 15 or so and ill for the first time - they all came back negative. My thyroid is normal - and in fact whatever they measure is on the good side of normal. I'm sure I don't have coeliac disease, as wheat is one of the only things I can eat (!). And I certainly don't have Lyme disease or hepatitis, because I haven't had the opportunity to become infected.
Yeah, it's essential that I get this checked out by a properly qualified person. Not panicking would be good too. Actually, I'm quite calm, just worried - worried because I need to get my thesis finished by June, and when I have these colds my head hurts too much for work. And the combination of head hurting-ness and depression is just not good.
no subject
Date: 2003-02-05 12:18 am (UTC)if the doc confirms the diagnosis of ME, though, would it not help to explain this to the university, and the fact that you've probably had it (undiagnosed) for most of your life? it might make them a bit more sympathetic towards you...?
no subject
Date: 2003-02-09 05:26 am (UTC)Elle xxx
and the good news is ...
Date: 2003-02-10 12:23 am (UTC)There are strategies one can use, the chief of which is to "aim low" in energy terms. It was explained to us as having a car engine that seizes up when it runs low on fuel. You have to remember not to use all your energy or you will seize up. If you have enough energy to do five tasks, only do four. That way the energy you might have used to do the fifth task can be used in recovery. It can be really difficult teaching yourself where your energy limits are, but people do learn in time, and often make trade-offs for things they particularly like doing. I think you know my daughter has had ME since she was 15. She's now 23 and years of managing her energy output are beginning to pay off. She is married and keeping house and looking after her husband is about as much as she has been able to cope with, but now she is starting to feel so much better that she might begin to take on some part time work to help their budget out. I really despaired when she was younger, it was so tragic to see the limits placed on her and to know how much she was missing out on. Yet she is a very wonderful person and has gained so much in terms of understanding herself and others.
Do try to get a specialist opinion. They say ME is a diagnosis of exclusion, so many tests may be required. I think Action for ME used to keep a list of specialists - you might want to try to see one of them rather than just your regular GP?