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Chronic fatigue

Posted , 9 users are following.

LyLy
LyLy

I have been diagnosed with CFS and have been housebound for a little over a year. I was wondering if anyone has completely recovered from this horrible disease. I have always thought the human body would eventually heal and recover after abundance of rest and sleep.

Is recovery even possible? Or only can be managed and live with for the rest of my life. I hate to be a burden to my family, it doesn't seem fair to them but I'm grateful that they are always there for me.

Besides pacing myself, is there supplements that has helped in seeing some kind of improvement. My fatigue has been plateaus with dips but haven't seen much progress. I've been functioning about 35% hoping to at least get to 50%.

It just seems like a uphill battle falling backwards and climbing back up seems impossible at times.

0 likes, 33 replies

33 Replies

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  • wknight
    wknight LyLy

    Posted

    Yes I can pretty much lead a normal life now. 

    Sometimes I do too much and immediately take rest as I know the warning signs. Its taken me about 3 yrs to get here but the journey was worth it 

  • janet71271
    janet71271 LyLy

    Posted

    It is good to hear people saying they have recovered and lead a normal life for them. I am genuinely pleased for you.But many do not get better. That is not a negative approach. I am being realistic. ,the majority of people who recover , specially those who make a complete recovery , did not have chronic fatigue syndrome. I said this in another post. There are several types of post viral fatigue . and yes people can and do recover. But there are many of us moderately to severely affected who do not get better. And we fight constantly to get CFS taken seriously . it is defined by the WHO as a neurological disease.

    No offence to anyone. I wish you all well x

    • janet71271
      janet71271

      Posted

      I will add though, it is not the time and of the world being housebound and not able to do much. Many of us have adapted our limitations . I like to make cards as do others. It is tiring so I have to pace myself with it. But it is fulfilling, restores some self esteem and worth. Boredom does not exist in my world . I have plenty to do if I feel I can do it. Alas it does not involve going out and about. Holidays etc. But I have come to terms with my limitations. Of course people want to hear they will get better. I hope they do. I really do. But some don't x

    • julia24924
      julia24924 janet71271

      Posted

      I hear you Janet, I think you make a valid point. Whilst I feel I have got to grips with managing my CFS a little better. I also accept that it looks like it is here to stay until someone out there finds a miracle drug. I feel that it is important to be aware that each individual has their own form of CFS.

      Today m off work because I have to try and convince my doctor to run more tests as I am concerned I have MS symptoms. I almost feel guilty for even thinking it. Yesterday it was acupuncture. My CFS has defined me. Others say don't push your self and I totally relate to that but if I didn't push my self I feel I would have fallen into a pit of misery that I could not have climbed out off, so pushing myself when I can works for me. I also keep the roof over our head, we would loose our home if I didn't work so that is just the reality. I have considered selling our home but didn't have the heart. . Often I don't even have the concentration to watch a movie, but when I can function I will even if it means I have to take pain killers to get me through it. I welcome your frustration. 🤐😨😰

    • janet71271
      janet71271 julia24924

      Posted

      Thanks Julia . have you never had an MRI scan to rule out MS ? I had one way back . my then consultant was concerned I might have MS. It was negative. The symptoms of MS and CFS are so similar. Infact much the same. So is important to rule MS out . I hope you can get this sorted out .
    • janet71271
      janet71271 julia24924

      Posted

      I don't really follow my own advice I do admit. I tell people to take it steady and pace yourself. But like you say if I didn't push myself I would be in misery too. I am not all doom and gloom. I am housebound but try to do what I can. More most times then collapse in a heap. Keeps my esteem up ! I am always in pain but can't tolerate medication . so try to distract myself with other things . not that I can concentrate for long if at all . permanently have a hot water bottle!!

      We moved from south to north three years ago this week. I have never got over it. My mother died 7 months after we came up . I have spent the past two years fighting her case as there was several issues of medical and nursing negligence. It has done my own health issues no good at all. But I have had to do it for mother and my own sanity !

    • julia24924
      julia24924 janet71271

      Posted

      Hi Janet

      I had a brain scan which didn't show lesions. But I had a recent attack which was v severe and I will have to wait on an appointment with the neurologist which could take up to six months, then hope he will arrange an MRI of spine. In the meantime I will try and get a private MRI of my lower back because that is all I can presently afford. 😟 A bit fed up as my GP seems quite convinced it's MS.

      I don't really care as long as I have something to work with. J

    • julia24924
      julia24924 janet71271

      Posted

      Hi Janet

      I'm sitting with a hot water bottle as I read. It's a permeant companion! Sorry to hear about your mum. I'm assuming you are American? I have had an ongoing battle with my son, and medical negligence, v long story and same as, it hasn't helped. Big hugs from here in rainy Ireland. Wish we could meet over a coffee!

      J

    • janet71271
      janet71271 julia24924

      Posted

      Hi Julia.

      No I am in the uk. It certainly doesn't help all the negligence stuff . I honestly don't know how I survived through it ! Sorry to hear you are going through it too. I am almost at the end if it but not quite.

      Sorry only just seen your posts. Having back carpal tunnel flare up and trying to stay off tablet and pc as much as I can.

      I hope you get your MRI sooner rather than later. If your going is so convinced he should be pushing for a more urgent scan. Big hugs from me too. Take good carex

  • LyLy
    LyLy

    Posted

    I was talking to a nurse and she told me she has a friend that suffers from CFS. She said her friend takes anti nausea medication twice a day to help with CFS. She's been doing this for many years and it has helped her alot.

    I was wondering if anyone else has tried this. I don't want to try something out of desperation and end up harming myself more than helping.

    • janet71271
      janet71271 LyLy

      Posted

      All the anti nausea drug will really do is just that. Alleviate feeling sick. I have nausea practically all the time . really over comes me a few times a day too. I don't tolerate drugs too well. So only take what I really have to. Like my heart drugs.

    • LyLy
      LyLy janet71271

      Posted

      Janet I was wondering if you have dysregulated blood pressure that doesn't seem to normalize. I been having this since having CFS and every now and then irregular heartbeat, also high resting heart rate. Cardiologist says heart function is fine and endo said it's not hormone issue. I asked my old rhuematologist he says CFS shouldn't cause heart issues. I am confused. I am going to see a new rhuematologist who has experience with CFS and hopefully she can answer my questions.

    • janet71271
      janet71271 LyLy

      Posted

      Hi taro

      Palpitations is very common in CFS . so it isn't exactly right what the rheumatologist said. I have atrial fibrillation. Was diagnosed a few years after my ME diagnosis . As they called it then. I still tend to call it that as most do who have had it for years. There is even a dispute as to whether they are the same thing. I had had palpitations and an irregular heart beat since I started to be unwell. But no one took any notice . until I saw a different endocrinologist after my first one retired . he referred me to a cardiologist. My blood pressure used to be very low. Is still a tendency to be on lower side .

      Have you had any tests for your palpitations ? ECG , echocardiogram . a 24hr ECG. I have had all these plus an A test which is an ECG monitor on for a week. I had it for two as the machine was dodgy ! Is done at home like the 24 hr one. I also had 24 hr blood pressure monitor too. If you have seen a cardiologist I assume you have had these tests. Sometimes it doesn't always show just on one tracing .

      I once saw a rheumatologist who was supposed to be sympathetic regarding ME/CFS. He was absolutely horrible to me !.he was all for the graded exercise thing and actuallyvsaid no pain no gain ! Told me I should be doing Pilate. I hope the one you see is lovely . x

  • LyLy
    LyLy

    Posted

    So today I went to my new rhuematologist to put a plan in place to improve my fatigue. She wanted to focus on my sleep, to get restful sleep. She prescribed me 10mg cyclobenzaprine to take for 8 weeks. Has anyone's fatigue improved with this or any sleep aid meds.

    What also interested me was that she said that most people develope CFS tend to have had abusive relationship in the past or childhood whether physical, emotional, mental or sexual. She said these kind of trauma can trigger CFS in people.

    I wonder if there is any truth to this as I have been in abusive situations in the past. Does anyone have some insight on this?

    • jackie00198
      jackie00198 LyLy

      Posted

      Getting restful sleep could only help your ME/CFS. I've read that stabilizing sleep is a first step doctors sometimes take for their patients with this illness. As far as the claim about people with ME/CFS having had abusive relationships--well, I'm extremely skeptical about that. So many doctors are drawn to psychological explanations for this illness, and minimize or negate the fact that it's a real illness with a physiological basis. I think a causal relationship between abuse and ME/CFS would be very hard to establish. I've never been abused. Also, I've been on many forums over the 15 plus years I've had this illness, and I've never seen this issue raised by anyone. Not one person in over 15 years. But let's say, for the sake of argument, that this was true. Then what? Are you supposed to go into therapy? How can this comment by your doctor help you get better?

    • LyLy
      LyLy jackie00198

      Posted

      I agree with you, it seems like when all lab work come back normal, doctors always assume you are depress and suggest going to a counselor. I always tell them I am not depress nor anyone in my family is depressed. Going to a counselor is not going to magicaly give me my energy back. Or they tell you to exercise more. I tell them I would if I'd had the energy. Luckily I'm not over weight otherwise I will not hear the end of it from them.

      It's been a year going from specialist to specialist and none even bother to tackle any of my symptons. They just say there is no cure for CFS and leave it at that.

      At least this doctor I think is a little more knowledge and tackling my sleep is exactly what I need right now. I haven't had a restful sleep in a year. As long as I answer no to all the psychological questions and not be pressured in thinking it's in my head. Honestly I don't trust doctors as much as I did before. It has been annoying and frustrating dealing with doctors.

      All I want to do is get better from here.

    • janet71271
      janet71271 LyLy

      Posted

      Quite a dangerous generalisation saying most people with CFS have had an abusive relationship.where on Earth did she get that one from ?! It is not true as far as I have seen in 21yrs. I come across quite a few who are in unhappy relationship s . And those who have split up but usually due to the stress and strain caused by this disease. As w3 know it is hard for us to live with and in turn can be difficult for partners, spouses families to understand
    • janet71271
      janet71271 LyLy

      Posted

      Sorry my tablet was playing up . Split post !

      I never have refreshing sleep . Never feel recharged. The more I sleep the worse I feel . I tend to wake up every couple of hours. I have to sleep semi upright since a frozen shoulder a few years ago so difficult to be comfortable in bed.

      I was offered amitriptyline in the past but it doesn't not mix well with heart drug I have to take . The consultant had no idea ! It was boots the chemist who refused to dispense it. The consultant was mortified when I told him. He apologised profusely.

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