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maoribadger
Posts: 1,837 Member
Got a questionnaire through the post today for the ME clinic. I have to fill it in within two weeks to get an appointment. It's a start at least
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Replies
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Sending up thanks for movement in the right direction, however small!! (hugs)0
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Well having sat and read the questionnaire, accompanying letter and leaflet they sent it seems they dont have any firther tests to do and have accepted my GP's diagnosis so they agree I have ME. The questionnaire is about symptoms and the appt I get will be to learn how to manage them and deal with it
Not totally sure how to feel about this0 -
Hey Lise, maybe I'm lost.. I apologize... what's ME? And why is a GP making a psychiatric diagnoses? My GP wouldn't even think about it.0
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ME is Myalgic Encephalopathy. Its also called Chronic Fatigue Syndrome or Post Viral Fatigue Syndrome. Its not a psych diagnosis. I went to my GP - well have been several times saying Ive had about a 2y history of extreme tiredness, aching in my joints, heavy limbs, sensitivity to noise, difficulty concentrating and she has done bloods for thryoid, anaemia, diabetes and various other things which keep coming back negative so by process of elimiation she has diagnosed me with ME. She did initially say last time I went it was depression but I said I feel like its not the depression making me tired but the tiredness making me depressed.
So I am waiting to go to this ME clinic and see what they have to say. Its not one of those things you can fix unfortunately. Its about learning to deal with the symptoms and not trigger them off. Things like this OCR I did at the weekend for example have left me shattered with heavy limbs and pains in my elbows and ankles. So Ive decided to drop the one I had booked for next month. Im assuming the weight lifting doesnt kill me as much because its not cardio. Which does. Its intermittent but when it flares up I dnt even get off the sofa and go to the gym because i can hardly move or take the stairs.
The Mental health team is a whole other appointmnt in itself I am still waiting on as last time I saw her I was having a flare up of the exhaustion and was really low and flat in mood. It seems better at the moment though0 -
ME is the other part of Chronic Fatigue, eh? I had to look it up, too. WTH do you mean there are no other tests. Without an endocrinologist verification, I would never accept that diagnosis... The good thing is that it can be treated... I don't remember off hand whether it is "curable..." SIGH
Doing some basic google, this site looked interesting...
http://patient.info/forums/discuss/cfs-me-introduction-and-resources-437347
There are so many conditions now that are catch all buckets. Docs don't know what is wrong, so they give you a label. There are some treatments, but who knows? Just don't stop advocating for yourself. If something feels wrong, speak up...
I felt similarly when I was told I had Adrenal Fatigue and was on my way to CF. I now know a good portion of my issues were related to undiagnosed insulin resistance and untreated thyroid, combined with the supposed adrenal fatigue. I just had to much whammy me at once. I've no idea if I will ever be my personal best, but these days, most of the time, I feel better than in years!
But it is so individual and such... Either which way, I'm sending you good thoughts for everything. (HUGS)0 -
What is chronic fatigue syndrome/ME?
Chronic fatigue syndrome (CFS)/ME is a condition that causes marked long-term tiredness (fatigue) and other symptoms which are not caused by any other known medical condition.
CFS stands for chronic fatigue syndrome. Chronic means persistent or long-term.
ME stands for myalgic encephalomyelitis. Myalgic means muscle aches or pains. Encephalomyelitis means inflammation of the brain and spinal cord.
However, there is controversy about the nature of this condition. There is no test to diagnose the condition. The diagnosis is made in people who have a certain set of symptoms (which can vary in their type and severity). There is even controversy about what to call this condition.
The term CFS is often used by doctors. This is because the main symptom is often fatigue and the condition is chronic (persistent). There is also disagreement on the presence of inflammation in the brain or spinal cord which is implied by the term encephalomyelitis.
The term ME is the preferred term by many people with the condition. Some people with this condition feel that the word fatigue is an everyday word which does not reflect the different and severe type of fatigue that they have. Also, although fatigue to some extent occurs in most cases, it may not be the main or only symptom.
Some people believe that there are two separate conditions - CFS and ME. Other people believe that the two conditions are the same - but symptoms can vary.
Until these issues are resolved, many people now use the umbrella term of CFS/ME.0 -
KnitOrMiss wrote: »ME is the other part of Chronic Fatigue, eh? I had to look it up, too. WTH do you mean there are no other tests. Without an endocrinologist verification, I would never accept that diagnosis... The good thing is that it can be treated... I don't remember off hand whether it is "curable..." SIGH
Doing some basic google, this site looked interesting...
http://patient.info/forums/discuss/cfs-me-introduction-and-resources-437347
There are so many conditions now that are catch all buckets. Docs don't know what is wrong, so they give you a label. There are some treatments, but who knows? Just don't stop advocating for yourself. If something feels wrong, speak up...
I felt similarly when I was told I had Adrenal Fatigue and was on my way to CF. I now know a good portion of my issues were related to undiagnosed insulin resistance and untreated thyroid, combined with the supposed adrenal fatigue. I just had to much whammy me at once. I've no idea if I will ever be my personal best, but these days, most of the time, I feel better than in years!
But it is so individual and such... Either which way, I'm sending you good thoughts for everything. (HUGS)
I dont really know what to think tbh. Ive had a glucose tolerance test. Its all fine. Thyroid is fine, blood work is all fine. No signs of infection. I know it does fit my particular symptoms. When Im struggling I can sleep 12 plus hours without a second thought if I can get away with it. Its doing jack *kitten* for my confidence in my abilities as a mum I can tell you that0 -
Insulin resistance has NOTHING to do with a glucose tolerance test. The only way to diagnose it is symptoms and a FASTING INSULIN TEST.
I seriously cannot find a decent list of symptoms.
Craving sweets.
Not feeling full, even after having just eaten.
Feeling hungrier AFTER eating than before.
Feeling like any meal needs a sweet ending to feel finish.
Getting sleepy after a meal.
high triglycerides with or without low hdl
fatigue
no energy
only feeling energetic after a burst of sugary foods
headaches
discoloration of neckline, arm pits, inner elbows, knees, etc.
Skin tags
Difficulties sleeping, waking, or functioning
And a million other things I can't think of off hand...0 -
Lise, sending good vibes and lots of love your way!!!!
Thanks for the explanation, but I agree with Carly, make sure you advocate for yourself.0 -
You know Lise, something else occurs to me. Aside from the weird "third shift sleep displacement disorder" stuff they talk about, which I don't know why we haven't mentioned yet, have you been tested for sleep apnea? That sleeping forever bit reminded me of how I felt when my doc bullied me into getting tested.
Also, remember that just because your levels on a blood test are "in range," that might not be a healthy range FOR YOU.... I know you can't just switch doctors there, but you need to get a doctor who is willing to look at your symptoms and realize that not everything shows up properly on blood tests.
My PCP told me she thought I had thyroid problems over 7 years before it showed up on a test, and even that was barely enough for an endocrinologist without my 10 year history of numbers to blink at. He told my my PCP was a whack job. Fast forward to an new endo, and all that, and he literally applauded my PCP for keeping a watch on things. He told me that thyroid problems can take nearly a decade to show up on standard tests, and by then, you're usually already in a horrible destructive pattern. There is a comprehensive panel that gives a better picture, but it is really rare for someone other than a specialist to run a whole panel. Most docs run the one level and think that tells them what they need, when it is really only like having 1 corner piece to a rectangular puzzle...and trying to put it together without the picture and 10,000 tiny pieces...0 -
No Ive not been tested for sleep apnoea - it occurred to me but a) I dont snore anymore since losing weight as per my husband and b)it doesnt really cover all the range of symptoms just the tiredness. But the insulin resistance is interesting and I will mention it to my gp though I dont have the skin discoloration and only a cpl of skin tags.0
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Skin tags are supposedly one of the earliest signs of it, though it isn't fully medically accepted. The skin discoloration is after years and years and years or overworking the pancreas and some biproduct it creates. So early sign and deep condition sign...
I know my diagnosis as Insulin Resistant was a shock, but it actually explained a lot... And it can trigger/CAUSE a ton of other problems. It is likely that my IR came before my PCOS, and either contributed to it or possibly triggered/caused it. It is also likely that my hypothyroidism is a development of the untreated IR. It is crazy, because medical professionals are woefully ignorant of how common it is, how to test of it, and what the signs might be.
My PCP never suspected it that I know of, yet when my Endo ran the tests, and my PCP reviewed them, she panicked and acted as if my Endo wasn't taking it seriously ENOUGH...
Oh, and FYI, snoring is not always present with apnea. It is just the symptom we're most familiar with. It is more about oxygen absorption and interference and small muscle issues that cause us to temporarily stop breathing. At the time of my test back in like 2008, I stopped breathing over 255 times in 2 hours and my oxygen saturation got down to 69%. For anyone who doesn't know, an asthmatic patient below a 90% blood oxygen saturation is considered at risk for brain damage...0 -
Im not really sure what to think tbh I *do* think CFS/ME does explain my symptoms pretty much spot on though its a PITA it cant be fixed just managed. Ive spoken to my nutritionist. Even though Im not seeing her anymore shes going to do some reading for me if theres anything nutritionally that helps. Then its a case of waiting for a clinic appt.
I got a letter today from the mental health team. They arent actually bothering to see me. The letter details some changes to meds they want to make instead, namely stopping my ablify, dropping my remeron from 45 to 30 and starting me on effexor with a target range of 75-150mg. Im actually really pleased about this as the effexor is one ive used before and worked fairly well, didnt make me tired but i had to stop it because of fast heart rate, hoping this time that wont be the case and it will work really well with the remeron so thats quite positive.0 -
Well, I'm glad for the positive changes your mental health team wants to make, and I hope they work well for you, but i'm actually quite concerned "they aren't bothering" to see you!!! WTH is this world coming to??
And Lise, I've had SO many partial diagnoses that seemed to explain so many of my issues. And still no one big picture answer, so take that for what you will. I can SEE the IR on bloodwork on paper now, though, so that's a HUGE relief. It isn't in my head, etc.
I would do what you are doing. Research what you can. Change what you can. Find some peace where you can. Adjust what is being adjusted. And just wait for the appointments. Sending you hugs and feel goods!0 -
The mental health services in my area are shocking and I am not surprised they are not even bothering to let me go to an appointment sadly. The good thing I have heard about the combo im trying though is it sorts out your sleep patterns and is quite activating during the day so may do me a lot of favours in terms of the tiredness. I do feel positive about this. So much so my mood has lifted somewhat on its own. Aside from that though as you say its a waiting game now.0
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Lise, I'm so glad to hear that your mood has lifted some on it's own. Hopefully the effexor is the helping hand you need. I've been on it for 13 years now. Dose ranging from 200-375.
I will give you a tip in case they don't. If you are not on ER (extended release) for of effexor it works much better if you split the dosage up during the day. Right now I take 100 at 800am; 100 at 1000am and 75 at 1215pm. This keeps the dosage running through me all day. The doctor highly suggested this to me and although I'm MANIC once again... it's much better for me then the depression. I've never noticed it affecting my heart rate though.... this may help that also.
Much love and hugs,
Cari0 -
Thx Cari. Im awful at taking tablets I can just about remember to take my ablify and remeron at night. So will probably take the effexor in the morning when I get up and the remeron at night as I doubt Id remember a lunchtime dose. Means I remember to take my iron twice a day if i do that too - im meant to take it 2-3 times and tend to remember twice. Thanks for the thought though. If I *do* go to 150 it will be an extended release one but the 37.5/75 are IR. Got to go back and see the doc in 3 weeks. The fast heart rate happened at 375mg so hoping the fact im on a lower dose this time will help. I can see 75-150 being a good range with the remeron as well and I dont remember it making me tired so hping it will help that0
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I found that remembering to take one medication on days I wasn't working was getting dangerous in my forgetfulness, so I had to set a reminder on my cell phone with a completely different ringer. I'm happy to say that in the six weeks or so since I did this, I haven't had a time when I've forgotten it!0
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Im doing ok at taking it at the moment, Im taking the effexor in the morning and the remeron in the evening and managing to remember which is also when i take my iron so I get that twice a day now too.
The chronic fatigue clinic rang to offer me group sessions today which I turned down a)mostly because it collided with the school run but also b)because urgh strangers. So Im on a waiting list for one to one. But Im having CBT with my psychologist anyway at the moment and its going ok so Im feeling at the moment a bit more able to do things, Ive been fr a walk today and been shopping and done some housework. Now having a sit down because Im tired though but maybe i need to accept that and just sit down rather than trying to fight it and end up zonked out later. IDK0 -
(Hugs) I hope these new techniques work for you Lise!!0
