Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
I am hoping I can get some information, that's why I joined this discussion, as I am already a member of several on her.
For the past I'd say 6-8 months (that's when I really started noticing a change) I just feel tired and wore out ALL the time. I have chronic aches over my whole body and I am just exhausted. Even if I get hours of sleep (which I do sometime sleep 12-14 a day). I had to quit school for this semester because I just do not have the energy to go and I stay at home a lot of the time. If I have to go to the grocery store or somewhere I've gotten to where I have to use one of the power scooters because by the time I am half way through with my shopping I am so exhausted I can't stand up.
I went to see my doctor about this but she wasn't in so I had to see another guy and he told me, basically, that I am fat and I need to get more active. I tried to explain to him I am as active as I can be with no energy. I've tried taking B12 and it doesn't help at all. He told me fat cells store toxins and they are making me feel like that.
Okay I've been overweight all my life......I've never felt like this.
I was diagnosed with Trigeminal neuralgia in 2009 and I am on medications for that (Neurontin, Trileptal and Cymbalta) as well as other anxiety/depression medications and blood pressure and thyroid medicine.
I am really at my wits end. Could I have Chrinic Fatigue Syndrome and of so HOW do I get my doctors to take me seriously?! I had an appointment with my psychiatrist last Wednesday and I told him about how I've been feeling and he saids its grief from losing my grandmother in March. NO its not! I WANT to go out and be active, I WANT to go back to school, I just physically CAN'T!
Please any advice would be helpful in dealing with this.
For the past I'd say 6-8 months (that's when I really started noticing a change) I just feel tired and wore out ALL the time. I have chronic aches over my whole body and I am just exhausted. Even if I get hours of sleep (which I do sometime sleep 12-14 a day). I had to quit school for this semester because I just do not have the energy to go and I stay at home a lot of the time. If I have to go to the grocery store or somewhere I've gotten to where I have to use one of the power scooters because by the time I am half way through with my shopping I am so exhausted I can't stand up.
I went to see my doctor about this but she wasn't in so I had to see another guy and he told me, basically, that I am fat and I need to get more active. I tried to explain to him I am as active as I can be with no energy. I've tried taking B12 and it doesn't help at all. He told me fat cells store toxins and they are making me feel like that.
Okay I've been overweight all my life......I've never felt like this.
I was diagnosed with Trigeminal neuralgia in 2009 and I am on medications for that (Neurontin, Trileptal and Cymbalta) as well as other anxiety/depression medications and blood pressure and thyroid medicine.
I am really at my wits end. Could I have Chrinic Fatigue Syndrome and of so HOW do I get my doctors to take me seriously?! I had an appointment with my psychiatrist last Wednesday and I told him about how I've been feeling and he saids its grief from losing my grandmother in March. NO its not! I WANT to go out and be active, I WANT to go back to school, I just physically CAN'T!
Please any advice would be helpful in dealing with this.
I feel like I have tried everything to cure my chronic fatigue syndrome.
and the doctors just think you are making it up, or just to get on with it.
It makes me so angry, so I can really understand what you are saying.
at the moment the only thing that seems to be helping me in pacing my activities a bit better (which I know is not easy) and lots of energy drinks lol.
I agree with you, I would love to do all the things I did before. I struggle to do the minium I am doing now.
I don't really have the answers but if you ever want to talk to someone who understand, please feel free to message me. xx
You need to go back to your doctor and hopefully not see that same one. I am sorry you had that experience, the guy sounds like a real Jerk. you know your own body better than anyone so must go back and insist they listen better. If you have been experiencing this level of fatigue and pain for some time your doctor should be doing blood tests at the very least to rule out other treatable conditions. thyroid, iron levels, vitamin deficiencies, coeliacs, lupus, Lyme, rheumatoid arthritis etc.
Lost sunflower,
I would advise exercising caution with the use of energy drinks, they contain huge quantities of caffeine, many CFS sufferers will tell you they avoid the stuff like the plague.
They do give you a perceived energy boost, they trick us into believing we have energy when in fact we don't, this causes us to put strain and activity on a body that in fact truly need rest and restraint. Eventually you have to face payback from it.
First is that the diagnosis of cfs is eliminating a lot of other things that could be the problem. So you will need to go through lots of process of elimination before a diagnosis. Some of them are serious, so it's an important process.
Second, write down what you want to say before going to the dr. If you have cfs there is a chance that you won't be able to explain yourself as well as usual if you get especially worn out or stressed out at the dr. It's happened to me. Referring to the paper can also give you confidence if the dr. is running over you.
What I did is print a diagnosis list about cfs. I told my doctor, "I thin I have cfs or something like it and this is why." I went down the list and said which things I experienced.
You could be having a different reaction to your meds than you have had before. At the chronic fatigue clinic I was told that anti depressants cause fatigue. Thyroid problems can also cuase fatigue. Maybe these need to be re-evaluated and the meds adjusted accordingly.
Sleep problems can cause significant fatigue...and weight problems. Request a sleep study. You sleep overnight in a room a lot like a hotel room....only you have wires on. It's just one night. For process of elimination I would ask for the nap study too. It has to be done the day after the sleep study and you can't go home in between. Better than coming back and spending the night again at least.
Be sure to tell your dr what you told us. I mean the part about being overweight a lot longer than you have been fatigued.
Fatigued and sleepy are not the same. Sleepy you want to go to sleep. Fatigued you are all worn out. You may have to tell your dr the difference.
It helps to give examples. Tell the dr what you are like at your best. and worst. Tell how much time you feel that bad.
I really like the cfs section of about.com. The diagnosis list there really helped me figure this out.
As for the B12...at the chronic fatigue clinic I was getting B shots weekly. I asked if I could just take vitamins instead. The answer was no, that it would not be absorbed as well and therefore would not be enough to feel a difference. The shots did help me a lot. It took a couple months of weekly shots to start feeling the difference.
Pacing yourself is the very best thing you can do for cfs and it seems to help everyone. About.com has a great description of this in their cfs section. The idea is to figure out how much activity you can handle without feeling worse. Then to slowly add activity, but back off and do less if you feel worse. Over time this can give you more energy. It can also minimize your crashes.
Get your nutrition levels checked in a blood draw along with any illnesses that could cause fatigue. That is what the chronic fatigue clinic did. They checked for a lot of immune disorders.