Up Front: Something Chronic
400 Responses
First ←Older Page 1 … 9 10 11 12 13 … 16 Newer→ Last
-
So everyone, just think positive thoughts, see your illness as a gift and think of yourself as a survivor, not a victim.
Kidding. Kidding above here.
LOL.
-
Dyan, I'm sorry if I was getting you all wrong. I am sometimes guilty of leaping to conclusions! And I can be quite combative too. I don't mean any harm.
It's partly a result of having had to argue my case so many times over the course of my illness. So I'm likely to think, "I know how this goes..."
<note to self: next time ask for clarification first>
-
What helped me:
- supportive family, I was able to quit work completely for 18 months.
- supportive medical professionals (Dr Vallings particularly, as said)
- increasing salt intake to retain minerals
- low dose amitrip to regulate my sleep cycle and ensure I went through the proper peaks and lows of sleep every night
- zinc
- B12 injections
- acupuncture. I went to a lovely acupuncturist who was recommended by my GP. Whether the acupuncture itself did anything who knows, but it was nice to actually feel like I was having a "treatment" that was physical instead of just "time". Probably placebo but it was like having physio or a massage or similar physical treatment.
- time.
- luck.Did/does anyone else with CFS feel like that? Your body is such a focus (because it's not working correctly) but at the same time it becomes this sort of detached thing into which you put the suggested treatments but you have no idea what's really happening in there because there's no definitive test or scan or whatever that can show you this is what's wrong with you.
-
Sue,
What helps me
- b12 shots twice a week
- efamol marine (but i can't afford it) make a huge difference
- toyohari a Japanese acupuncture or acupressure. Any other acupuncture or massage makes me worse as it overwhelms my body
- My Mum! I was diagnosed at 19 suspect of having CFS sine i was about 7 or 8 I'm now 38 and i live at home (which some days is enough to make me cry) and I do as much as i do (running craft2.0 having a wee jewellery business) becuase my Mum is my lifeline to the world.
- The internet, where nobody knows you are sick
- MY GP, my GP can't fix me, but when I'm having a particularly bad time she waves her magic glitter wand (yes she really has one) over me and it makes me smile and that's something.
- crafting, making things with my hands makes me smile.
- gentle swimming, ideally in the sea as it's less toxic than a swimming pool
-
- toyohari a Japanese acupuncture or acupressure. Any other acupuncture or massage makes me worse as it overwhelms my body
My acupuncture was also Japanese, it's much gentler than Chinese. It made a huge difference to my pain levels, which I was especially grateful for because I'm very reluctant to take pain medication.
Also, yes, I started writing at Bardic Web during my worst years with CFS, and being able to be creative at my own pace and have contact with other adults without having to make physical effort was hugely helpful. And that led to me starting working, again in a way that could accommodate my physical unpredictability.
-
There is coercive advice, overbearing advice, manipulative advice annnd
I have this condition, I've found this helpful- -
- crafting, making things with my hands makes me smile.
Sue, your jewellery is beautiful - it makes me smile as well. In general (this goes for Emma, too) I'm just wildly impressed that the creative spirit is so willing when the flesh is weak. Brava.
-
In general (this goes for Emma, too) I'm just wildly impressed that the creative spirit is so willing when the flesh is weak.
Yeah, I was reading, thinking "being generally awesome must help too, right?"
But also... look, every time you try a pet therapy and it fails, it's like another nail in the coffin. Every time Graduated Exercise Therapy didn't work, I blamed myself. Because it was supposed to, so it must be me fucking up. Not being strong enough. Finding out that it actually DOESN'T work for chronic fatigue was huge.
I've been thinking about this overnight, and I say this with all the love in the word, but you realise that's ridiculous, right, Emma? You're blaming yourself that things don't work for you.
Man, if I could come up with a medical technique that worked for 100% of people, I suspect I'd be very rich indeed.
-
I've been thinking about this overnight, and I say this with all the love in the word, but you realise that's ridiculous, right, Emma? You're blaming yourself that things don't work for you.
Dude, it's not a level playing field. If a medical professional tells me that a particular therapy is a successful treatment for my condition but that it depends on me working hard and sticking with it, even I am going to believe them. And of course, I wanted it to work. I wanted to be well. It was easier to believe that I just hadn't tried hard enough than that there was no answer.
Also, exhaustion and brain-fog does not lead to clear decisivie defiant thinking.
-
Also, exhaustion and brain-fog does not lead to clear decisivie defiant thinking.
Of course. And I can see how you'd end up being all "but this was supposed to work. <shakes fist at world>"
I guess what I meant was, could you (all of you, not just Emma) not beat yourselves up please? It seems like you have enough on your plate without throwing a dose of self-recrimination into the mix.
-
This:
Also, exhaustion and brain-fog does not lead to clear decisivie defiant thinking.
I remember having many discussions with my partner where he was totally bamboozled by my thinking processes and how I had got from here to there. Looking back now I can see it was the effect of the brain-fog, and the depression I had at the same time. I found doing some counselling focused on that very helpful (and still do). I'm not entirely sure what I did was CBT, but it may have been. It basically gave me the ability to assess my thoughts more objectively, so I could tell when it was the disease(s) talking, rather than my true thoughts. I'm not explaining it v well, sorry.
-
3410,
I'm not entirely sure what I did was CBT, but it may have been
Probably was. Teaching you "to assess [your] thoughts more objectively" is pretty much exactly what CBT is.
-
Teaching you "to assess [your] thoughts more objectively" is pretty much exactly what CBT is.
Well, one form of CBT anyway. The kind that I've paid for, not the kind that I used to be paid for.
-
3410,
the kind that I used to be paid for.
I'm intrigued.
-
I'm intrigued.
I used to do CBT because I thought was paying me very well for a job straight out of uni, until it pretty much destroyed my wrists for a while - and they said it never happened and if I told anyone about it I'd never get hired ever again. (Potential employers: my wrists are fine now, thanks for asking!)
But that was, of course, Computer-Based Training.
-
3410,
I see!
-
Dude, it's not a level playing field. If a medical professional tells me that a particular therapy is a successful treatment for my condition but that it depends on me working hard and sticking with it, even I am going to believe them. And of course, I wanted it to work. I wanted to be well. It was easier to believe that I just hadn't tried hard enough than that there was no answer.
Emma, don't blame yourself for the the medicine's shortcomings. If your doctor advises something that doesn't work for you, it's not because you didn't do it hard enough, it's because the doctor was mistaken as to what will help in your case.
There will be an answer out their, but finding it is the hard part.
The problem with diagnosing CF is that "chronic fatigue" is a symptom of many different underlying conditions. Just because the cause of that underlying condition hasn't been identified certainly doesn't mean it doesn't exist - it just means it hasn't been found.
The problem treating CF is that what is causing fatigue in one person may not be what is causing it in another. For instance there are a number of nutrients where both the deficiency and the excess dose show the same symptoms.
One of the frightening things in modern, sophisticated, highly skilled medicine is the commonplace matter of overlooking the obvious. It's the doctor that overlooks the obvious, not the patient, BTW - we can't be expected to diagnose ourselves.
If you are deficient in something as basic as vitamin D or iron or iodine, the untreated deficiency will result in a serious illness eventually. GPs should be screening for things as basic as vitamin D levels (for instance) a common deficiency that has disastrous consequences left unaddressed. The early symptoms manifest as muscle weakness, muscle pain, aching joints, low energy and fatigue, lowered immunity, symptoms of depression and mood swings, and sleep irregularities. And vitamin D is just one of a large nutrient deficiencies that can cause chronic fatigue.
This is not to suggest that all CF is either a nutritional deficiency or the symptom of an underlying cancer or germinating illness. CF exist without an evident physical cause. And the idea that a syndrome that is debilitating and very real can exist without an evident physical cause is certainly not to suggest that it's all in one's head.
And to suggest that the perhaps the original physical cause has departed the scene, leaving a physical set of symptoms - debilitating, unpleasant symptoms - is not to suggest the disorder is in one's head either.
The new idea (not proved) of CF being a "reverb" or a kind of switch stuck on "fatigue" just as phantom limb pain is a switch stuck on "pain" does not discount the real nature of the syndrome.
Someone in agony from a limb that does not exist is suffering from genuine, excruciating pain. The fact that the source of that pain is gone and the experience of that pain is still stuck on HIGH in the brain is far from suggesting the pain is imaginary.
What the brain is telling the sufferer about the nature and location of that pain is flat out wrong. The brain is misinterpreting the signal that it is receiving.
This can't be overcome with "thinking" but it can be overcome with giving the brain new messages. "Thinking" and giving the brain new messages are not the same thing. "Seeing" is used much more than "thinking" in this kind of therapy.
Mirror therapy makes the sufferer see their proper limb (a reflection of their opposite limb) and when their "missing limb" or the reflection of their good limb is put through paces, massaged, stretched - enormous relief from pain is experienced and they feel the effect in their missing limb.
Again, their brain is not "correct" in experiencing sensations of any kind - including a relief from pain and cramp - if the location is the limb that is not there. But where the brain is right or wrong is not relevant to the physiotherapist - the desired effect is to make the brain think everything is A-okay with the missing limb, even if that is "incorrect" also. The brain may still be mistaken (believing that missing limb feels better when they "see" it relaxed out and stretched) but the relief from pain is the objective, not correct proprioception. The brain is allowed to go on "believing" in the limb - it's just that it is now convinced the message "pain" is no longer a relevant one to send to the brain.
The suggested model of CF is also being examined as a possibly model which may make it easier to treat a similar - very likely related - specific and much more severe form of CF.
The precise mechanism that causes PPS is unknown. It shares many features with the post-viral chronic fatigue syndrome, but unlike that disorder it tends to be progressive, and as such can cause a tangible loss of muscle strength.
I'm not saying there is an up an running treatment of this nature for CF based on this model - I am only saying it is being explored as a technique for treatment.
-
Dyan, can I ask you to be a bit more precise with your terminology? I know it's not easy when CFS has so many different names, but Chronic Fatigue Syndrome is different from 'chronic fatigue'. CFS is a condition - or a closely-related group of conditions - whereas chronic fatigue is a symptom, as you've said, of a whole bunch of different things.
Also, while I do understand what you and Megan are saying, being told how to feel about something isn't actually all that helpful. I was trying to explain the emotional experience of treatments failing, as an insight into why people may not actually be keen to get on the bus with the next exciting new development. "Don't take it personally" is kind of... close to 'buck up'. Please don't explain what you meant, I know what you meant, and I'm saying it doesn't help. Or at least, it doesn't help me.
(It hasn't all been 'boo hoo I'm so useless'. I did actually ask my partner to run my immunologist over in the hospital car park.)
-
Blame Linus Pauling for that - he got it in his head back in the fifties that it was some sort of miracle cure, and because he was a Nobel laureate it's never gone away even after it was conclusively disproved (that massive amounts of vitamin C were good for *anything* in particular.
Er, Lucy, you want to revisit this statement?
Vitamin C plays vital role in battle against cancerNew research from the University of Otago, Christchurch, shows that vitamin C can help curb the growth of cancer cells.
The study, led by Associate Professor Margreet Vissers of the University’s Free Radical Research Group, is the first real evidence of a connection between vitamin C and tumour growth.
Associate Professor Vissers says “Our results offer a promising and simple intervention to help in our fight against cancer, at the level of both prevention and cure”.
The article is in the latest edition of the prestigious Cancer Research journal.
The role of vitamin C in cancer treatment has been the subject of debate for years, with many anecdotal accounts of the beneficial role of vitamin C in both the prevention and treatment of cancer.
Previous research by Associate Professor Vissers has demonstrated the vitamin’s importance in maintaining cell health and hinted at its potential for limiting diseases such as cancer.
Her latest study looked at whether vitamin C levels were lowered in patients with endometrial tumours.
It investigated whether the cancer cells had low vitamin C levels and whether this correlated with tumour aggressiveness and resistance to chemotherapy. Associate Professor Vissers and her colleagues found tumours were less able to accumulate vitamin C compared with normal healthy tissue, and that this related to the ability of the tumour to survive and grow.
Tumours with low vitamin C levels had more of a protein called HIF-1 which allows them to thrive in conditions of stress.
The findings are significant as they show, for the first time, a direct relationship between HIF-1 and vitamin C levels in tumours and suggest it would be beneficial for people with cancer cells to have more vitamin C. This could help limit the rate of tumour growth, increase the responsiveness to chemotherapy and may prevent the formation of solid tumours.
-
Also, while I do understand what you and Megan are saying, being told how to feel about something isn't actually all that helpful. I was trying to explain the emotional experience of treatments failing, as an insight into why people may not actually be keen to get on the bus with the next exciting new development. "Don't take it personally" is kind of... close to 'buck up'.
I'm sorry if I'm telling you how to feel - I am not communicating properly if that's what you're reading. I know I don't have the right to tell (or even suggest) how anyone feels.
Dyan, can I ask you to be a bit more precise with your terminology? I know it's not easy when CFS has so many different names, but Chronic Fatigue Syndrome is different from 'chronic fatigue'. CFS is a condition - or a closely-related group of conditions - whereas chronic fatigue is a symptom, as you've said, of a whole bunch of different things.
I do try to be precise with my terminology. And yes, I am aware of the difference between CF and CFS.
What I am saying is that doctors often get things - like diagnoses - and advice - dangerously wrong. This is where and why I distinguish between my use of CF, CFS and PPS.
Forgive me if this is tedious or comes across as preachy.
I am not sure how to buffer or make less onerous what I am writing. There is not instruction, no judgement, no conclusion on my part, so please excuse the parts that read as though this is my position!I have seen many people made much sicker from a lack of information and from sub-standard care from their GP. Actually I've seen people (here in NZ) die from crap treatment by GPs, come to think of it.
I also know several people (all women) who were given diagnoses of CFS when CF would have been closer - and less dangerous. In one case there was diabetes, in another congestive heart failure, in another thyroid disease. And one poor friend had cysts on her liver from parasites - also diagnosed as CFS. It can sometimes be useful to keep looking at underlying causes.
I am not advocating anything, I am simply saying this field of study or that field of study is showing some interesting data; don't have any expectations of anyone.
Emma, don't blame yourself for the the medicine's shortcomings. If your doctor advises something that doesn't work for you, it's not because you didn't do it hard enough, it's because the doctor was mistaken as to what will help in your case.
I don't mean to tell you how to feel or deny you permission to blame yourself... I'm just saying the doctors can miss things... get things wrong. You do realise I was agreeing with you here, right?
-
Er, Lucy, you want to revisit this statement?
I'm not Lucy (she's prettier) but I'll comment.
Cell lines are not humans. Just because you can have an effect in cell cultures where the compound you are playing with is in direct contact with the cells does not mean it has any effect when delivered through the gut and then (maybe) through the bloodstream and then (maybe) to the cells of interest in a whole organism.
This is a nice study and interesting. What now becomes an interesting question is why don't high doses of vitamin C do anything in whole people?
Because that is what Lucy pointed out, no study has shown that high doses of Vitamin C, delivered orally do anything for any disease including cancer. So please by all means eat fruit and veges but IMO spending money on vitamin tablets is a waste of time ... unless you have a specific health issue that requires specific supplements.
What this may suggests is that delivering vitamin C to the tumour directly may do something interesting but we are a long way from showing that.
-
The problem with diagnosing CF is that "chronic fatigue" is a symptom of many different underlying conditions. Just because the cause of that underlying condition hasn't been identified certainly doesn't mean it doesn't exist - it just means it hasn't been found.
When I had CFS thinking about this just wasn't that great news. Every time a new symptom came up or an existing one worsened it usually meant another test (time consuming, painful, anxiety-inducing) to rule out another potential disease that had a similar symptom.
Or it was just another excuse for me to beat up on myself "For god sakes, everyone gets tired!". Knowing that your particular syndrome is currently just a collection of symptoms that also occur with other diseases/syndromes/conditions isn't as hopeful sounding to the person who isn't well as it is to people who are. Which kind of goes to the heart of the first sentence in Emma's post - giving something a name can be quite powerful indeed.
It all adds up to going through a constant cycle of denial and validation (by yourself, by your medical professionals, by everyone), not to mention I felt like it was just fluffing about without actually *doing* anything.
-
It does seem that it is the collection of symptoms that is the key to CFS. Any one symptom could derive from another cause but having all says it's this damn thing we don't really understand yet that we call CFS.
The importance of that is that it changes the treatments and it changes what it means for the patient. Fatigue caused by one source may well be treated well with a particular approach but if the fatigue is part of CFS then that treatment becomes inappropriate.
That has implications for how easy it is for a GP to recognise. Most GPs are unlikely to see many cases.
-
On the subject of brain-fog and weird thinking I quite often found myself in public double-checking that I had my pants on.
Because I would realise I couldn't really remember how I'd gotten myself to where I was at that point in the day, and developed a bit of a paranoia that I was going to go out forgetting to have done the basics (like dressing)!
And one has to remember, those were good days.
And my spelling ability downgraded considerably. That really got on my nerves.
-
Sue,
http://www.demonoid.com/rss/users/gpateire.xml</quote>
I now tell everyone my spelling and grammar has cfs as well ;)
Post your response…
This topic is closed.