Hi all,
I've had CFS for just over one year now. I just wanted to know from fellow sufferers do you find your CFS is MUCH worse in the morning, like first thing as you get out of bed ? This happens to me, for the first 5 minutes it's like my legs just don't work properly, get into a panic about it. I just feel so not right. Also do you feel you improve as the day progrsses, at your best from 11pm, then feeling more tired at arounf 5-6pm ? This has been my general pattern. How mamy of you have seen an immunologist and did you feel it worthwhile ? I have yet to see an immunologist.
Thanks for reading
I had CFS very bad for the last 7 years. I never slept at night at all for all those but wanted to sleep early hours of the morning and could sleep until 3pm in tad afternoon. Then fir the rest of the day I would wake up a little more until bed time when I was wide awake. It totally took over my life, no future to even think of. It done a lot of damage to my marriage and my family. You have probably noticed that I have been talking in the past tense. Yes I have and that's because I started looking at medications that I was taking and pinpointed it to one of them, more or less to the day I started this particular medication. I stopped taking it with immediate effect. From that day my life turned around, I started sleeping that very night. That was only 2 weeks ago and everything has changed and still improving. I now feel I have a future.
Can an I ask you if you are on any medications, especially for pain relief and if so can I ask what they are?
Katie
Hi Katie, i have not been taking any medications, i took amitriptyline once to help with sleep but felt worse the next day so came off it. This was many months ago. I also worry about my future, on days like today energy is so sparce, completely housebound at 34. Last year i was a super fit triathlete. I remember in the beginning with my illness sleeping was almost impossible, this is one thing that has improved the past few months for me, i no longer have to dread going to bed knowing i am going to lie there feeling so lifeless and inhuman. My legs are like jelly this mornnig, very weak. I'm putting this down to doing too much the past few days, which = 30min walk and a trip to the shops. Really depressing this is my limit in life. I do live in hope.
Hi David
Yes I have similar starts to my day... You awake but your unable to move and gradually you get the use of your limbs back, its kind of like an old car trying to start up on a cold and icy morning and needing a bump start...
I avoid the panic mode my brain tries to put me in every morning as it slows down the process of getting out of bed. Family think your just having an extra 5 min’s lie in as you don’t want to get up, but it couldn’t be further from the truth.
My wife now has to assist me every morning to get up and going and 20 years on from when I first developed ME it’s far worst. Like you say, I'm at my best around the mid-day mark before the fatigue starts to take over again. If I do not take, regular rest ups during the day I am exhausted by 5pm and unable to walk & unable or drive etc.
I have to be fully stopped way before 9pm otherwise I just do not sleep at all and have to have meds to get to sleep ( due to twitching and restless arms and legs all the normal ME stuff) stopping before 8pm is even better but you tend not to have a quality of life at all. I have days when I have to catch up and I will sleep 20 hours quite easily, I find you have to balance your life very carefully especially if you have kids etc. I tend to do what I have to; I never have enough energy to do everything I would want to, if that makes sense. You have to decide what each hour/day I need to achieve and adjust the day accordingly. When I am tired, I tend to bump in to stuff, and fall over banging my head or similar so I know I’m well past my energy levels need to function, my wife normally sees the telltale signs before this and makes me stop and rest.
It is very important to stay focused and positive otherwise, it’s a very dark place you can descend to and that’s not fun for anybody especially loved ones who tend to suffer also.
I have seen immunologists and neurologists and had countless scans and blood tests over the years, and have been told on several occasions it’s currently an untreatable incurable condition, which sucks like hell… The symptoms can be similar to MS but they just don’t know how to effectively treat ME/CFS. I have tried all different treatments and none has really worked over the past 20 years however, I find pacing and some graded exercise can help if I’m feeling Ok but if I’m not it just makes me ill.
I hope my reply is of some use to you and other who read it...
Hi, thanks for that. It's been therapy for me joining this forum and speaking to fellow CFS sufferers, i can't get CBT, local hospital unable to provide it. Really gutted by that. Did you ever try LDN ? Probably my next port of call. There is also the Synergy Trial expected to be completed Janu2015 using loww dose ritalin. We live in hope someone might figure out what CFS is and how to cure it.
Has anyone tried homeopathy ? I knew one woman from the local pool, when i was well, who got ME, she recovered 80% aftyer 2 years and said the only thing that helped her was homeopathy.
Hi david
Like you I live in hope of a cure but ME has been about since the 1930's I think if not longer. So I'm not sitting back waiting for them to come up with something, I will be dead by the time they figure it all out... I have read about the Ritalin trials; Ritalin is a central nervous system stimulant that increases levels of dopamine and norepinephrine in the brain, fingers crossed they show some positive results.
I have been on some NICE trials myself in the past as a “guinea pig”.
Hi David,
You could be describing me and my life generally. I am now 7 years ill and I can pretty much anticipate how I will feel depending on what I do. Mornings are bad. I wake and often feel dizzy, nauseated and very weak. I also have a lot of pain. I know that I can't wake and get up immediately. I get some help after a wee while to go to the loo and then back to bed for a while till my body comes around. The rest is pretty much what you and others have said. I sleep some days for 18 hours as though I need to replenish the energy bank. I try to pace but life doesn't always allow that. I haven't worked regularly since becoming ill. I have tried a couple of part time jobs but just couldn't cope after a while....I mean physically and they weren't 'physical' jobs. However I am now considering work again. I really need to financially and socially but also need to know that I won't make myself really ill doing it. I have found a local job which is afternoon to early evening on 3 non-consecutive days. This, in my experience, would be manageable I think. Keep fingers crossed for me.
I have also seen many doctors from immunologists to neurologists to rheumatologists and psychiatrists. It is pretty much what dragontest says - so far ME/CFS is incurable. However, I have found out about a trial about to take place in London for RITUXIMAB. There have been some successful trials using this drug in Norway and the ME Association has raised funds (£350,000) to run similar trials in the UK. This is the most promising thing I have heard of since becoming ill and I am keeping my fingers crossed that it will be successful. Unfortunately the drug is very expensive though, in our favour, only two or three injections are required over a period of a few weeks. Currently this drug is prescribed in the UK for rheumatoid arthritis so it has already been approved by NICE. Keep your fingers crossed for this and do try, meanwhile, to accept your limitations, and make as much of your life as you can within them. I know it is difficult. We all go through a grieving process for the life and person we have lost. Hopefully some medical assistance will be forthcoming in the near future. Keep coming back here - we all, at least, understand what your are experiencing and you may get some useful advice or information.
Linda
Hi, do you live in the UK ?
So you've not tried LDN ? I've read alot of positive testimonials with CFS folks in the U.S using stimulants like adderal to dramatic effect. I've been going down the natural route for the entire year and coming into my CFS i was the healthiest and fittest i had ever been. I do see one common denominator in CFS, which is stress. The 2 years prior i was pushing my body constantly at work (heavy lifting warehouse job) then i would hit the gym, swim long distance/run. I feel not one of these things could have done this to me but BOTH=CFS. You never know what to expect from day to day with this ilness. So for me as treatment options, i have LDN, stimulants, homeopathy. Did 3 months TCM with no benefit, costed me £1500. Financially CFS is brutal in terms of trying things. Asking god for help as well. Why not.
Hi Linda, many thanks for all that. Do you feel your 'ME/CFS' has got better or worse over the years, i was getting worse for the first 9 months but feel energy wise it is stabilising (could be wrong but i have a diary) still low energy and if i do too much i crash hard, like today. Yesterday i did 30mins walking, threw in some 20metre jogs (felt horrible but did it anyway) i then went home recovered by resting, went to the cinema (which is just a short 5 min bus ride, minimal walking). Anyway i would struggle to walk the distance of the street today nevermind do all that. I guess this is the world of CFS. Yeah i have lost the person i was, good way to put it. Don't want to let him go completely but maybe that person was dangerous and i need to create a new one, hence the CFS.
I'll need to keep an eye on that new study you mentioned. Research time. PM me anything you think i might find useful. Stay in touch. All of us need to stay in touch with one another. I plan on attending my local ME support group next year.
Just going to throw these two things out there as possible natural treatments.
CARNIVORA and pine cone extract (immunophen). Anyoen tried them, heard of them ?
Sorry .....the charity involved in Rituximab trial is not ME Association but Invest in ME. The funding has been raised by them and sufferers like us.
Yeah that's amazing, there is such a drive out there to deal with this very real physical illness. Anything that gives me hope allows me to continue on. Especially on days like today.
You describe my pattern. I struggle every morning to get out of bed. Am at my worst in the morning. Sometimes I start feeling better in the evening. When I was first diagnosed, this pattern was very strong. I would feel so much better at the day progressed that I could go out and do normal stuff. I have't heard of seeing an immunologist for ME/CFS. Typically, infectious disease specialists or rheymatologists are knowledgeable about this illness.
hi Jackie, i was looking at Holtorf medical in the U.S and it really bothers me CFS seems very treatable but we are being failed by the medical system. You might want to check it out. All the best, knackered.
Hi, David:
I actually called this clinic when looking for a new doctor, because they’re in my general area. The person answering the phone very quickly got to the question of money. They wanted a whole lot of it, and there was a question whether it would be covered by my very good insurance plan. I then went to their website, which is very slick. Finally, I read through Yelp reviews, and a lot of them were very troubling. They mentioned being charged huge amounts of money, and, in some cases, feeling a lot worse after treatment. I think at least one person actually ended up in Emergency. The picture I got of this place is that they’re very good at marketing and saying all the right things. In practice, much less so. It also seems like everyone who goes there gets treated for low thyroid. That always sends up a red flag for me: when all patients get swept into the same category. I decided to go with another doctor who’s reputable, knowledgeable, and all-around wonderful. David, please know this: CFS is not very treatable. It’s a very complex illness with no known treatment except for dealing with symptoms. I think some doctors have made some headway into possible causes and treatments, but everything is still very much in the experimental stage. This doesn’t mean that we can’t get better or at least improve. From what you’ve posted here, I think you have a great attitude and are doing everything you can. Because of the complexity of ME/CFS, I think there are probably different paths into the illness and different paths out of it. I think you have every chance of finding the right path for you.
My husband has to get me out of bed too each day around midday - before that is nigh impossible. Like you, I'm like a zombie, wracked in pain and very weak. I've to force myself not to fall back into bed. I have gone back to sleep sat on the toilet more than a few times too. Having a shower in the morning is not for me under any circumstances! It takes me all my time to get dressed and go downstairs then I fall on the settee exhausted. I stay there most days until about 3:30pm when I feel quite a bit better. I would say I'm at my best around 6:00pm -ish. I could very easily fall asleep at ANY time, day or evening though if I'm just sat watching TV, but can just about keep awake if I'm busy with something - sat down of course, I'm in too much pain to stand for any length of time. I only do small jobs most days, but there are times when I have to be on the computer for a few hours at a time once or twice a week (I've even nodded off at the computer).
Once I get comfy on the settee after the evening meal, or after having been on the computer until late, I just don't want to move, even to go to bed. Eventually, about 3:00am, I will drag myself off the settee, tidy up a little and go to bed. I get to sleep quickly and usually sleep until my husband wakes me the following day around mid-day. My sleep is usually broken because of the back pain and needing to go to the toilet at least once. My husband, who supports me with this illness, falls asleep most days after we have eaten in the evening. He will have probably been out shopping, and cooks our meals but only goes to bed when I do. I only load the dishwasher and get it going. I'll do some ironing when absolutely necessary. I pay once a week for a cleaner!
I do take quite a lot of medication for high blood pressure, cholesterol, IBS, acid stomach, urge incontinance and severe back pain. I also have the other usual CFS symptoms such as muscle weakness, clumsiness, short term memory problems, excessive sweating episodes, sore throats and uncontrollable movement of legs in bed and sat down. My pain medication is 10mg morphine tablets with morphine liquid inbetween the two doses of tablets, but I know the tiredness I have is not purely the morphine as I was like this even before I was on this medication. 10mg x 2 + liquid doesn't take the pain away anyway, just eases it slightly.
i thought it was just me who felt so awful in the 'mornings'! What a terrible illness. At least most of my life has been normal, only getting this CFS late in life (age 65 when this thing started, now 72), but I feel so sorry for the young people who have this debilitating illness. It's so much more frustrating when doctors can't help.
Thanks Jackie, yeah all the alternative options+promises like in the UK charge HUGE amounts of money to treat CFS. I have been given information and you should research this in relation to CFS and hypothyroidism, people with normal thyroid tests are not normal, when prescribed thyroixine they effectively feel cured. My GP will not test for T3 levels because my T4 ad TSH are normal. So much confusion about things, lots of testimonials with people suffering like we are with the CFS label and end up cured by treating the thyroid.
Stay in touch.
Hi Kath, thanks for that. Yeah i'm 34 and it's tough. Trying to find a way out everyday. God bless, take care, stay in touch.
Hi to David and all of You.
Here's a real message of hope for all of you.
I had CFS for 18 months and I am OUT OF IT! Just like that.
I went through hell for 18 months just like you.
Seeing countless of specialists, docs, naturopaths etc..doing countless of bloodtests and scans, and eventually got so depressed had to take pills for anxiety and sleep.
Than started a new treatment in October and within weeks was back to normal, could walk my dog again, go back to full time teaching , and regain my health and energy.
How did I do that? Acupuncture!
It was like a miracle, I could't believe it!
Besides the acupuncturist cured other people with CFS!
So all you have to do is find a good TCM (Traditionnal Chinese Medicine) therapist, that can prescibe plants and do needles.
No more depression for me , no more swollen glands and sleeping pills, and just very light symptoms now, as I am still on the road of recovery!
So here you go!
If you are as desperate as I was you can give it a try!.
Wish you all good luck and good health