Hello,
This is my first post here, forgive me if it's the wrong section it's been posted.
I will keep this brief. My mum was diagnosed with rheumatoid arthritis 10 years ago. She's been taking numerous drugs but none have worked for her long term. She was hospilised 2 years ago with sepsis. Dr didn't listen to her attempts to express that she wasn't happy with the drug she was taking, even though she contracted shingles and other symptoms of allergic reaction to the drug.
She been put through a lot, I feel not really listen to by drs and now she's in a situation where she's on a high dosage of steroids to reduce inflammation.
This moment in time, for the past 3 weeks, she's been extremely exuasted, sleeping 15+ hours day. Doesn't feel she has the energy to do anything. It's such an effort to get out of bed. She's hasn't been able work either. She's crying a lot, no weight gain, no lymph swelling. All blood test are normal.
However, I feel she has chronic fatigue, the Dr thinks its depression and prescriped her Prozac. He said, she's been though a lot and thinks she's mentally hit a wall. I'm still not conveined. When I see her struggling, it's because she hasn't got the engery to do anything.
I hope this hasn't gone on for too long. I'm just looking for any advice, experience from anyone who's had this.
Thank you you very much.
Hi Rebecca
So sorry to hear that you and your mum going through such a difficult time . Depression is often passed off for CFS, and can also be a symptom especially if the patient feels they are not being heard, or because they have had enough. A typical symptom of CFS is chronic Fatigue, this is not just a feeling of tiredness rather a heavy painful restlessness. Sometimes I'm so tired I cannot sleep. Heavy arms and legs. A weak immune system is also common, where you are likely to pick up viral infections, when I get symptoms of a virus I usually get the fatigue. Go and find a doctor who knows something about CFS and start there. You sound like a v caring daughter,😉
Thank you Julia ☺️ It's hard seeing mum like this. I've been reading more and more into CFS and I really feel like my mum's been misdiagnosed with depression. She doesn't kown what to do with herself. Usually she's up at dawn, however I've come home and she's still in bed until 11.00 and she's still exhausted. She's thinking about all the things that she wants to do but physically cannot do.
How did you find a Dr which specialises in CFS? Google searching?
Hi
Ask your mum to take turmeric in a glass of warm milk, I normally use about a teaspoon of it in a glass it is really good for inflammation, pain, viruses and you can pick it up a lot cheaper in s indian/Pakistani grocery store
I hate to say this but you should be hoping your mum has depression because that can be cured, with CFS there is no magic pill to take. CFS has to be going for at least 6mths and then it's the diagnosis when all else fails. You really need to see if it is depression first or simple a reaction to the drugs she is taking.
when she has been like this for 6mths then start considering Cfs, otherwise try the depression route. Prozac may nor work for her or the dose could be too low
Hi Rebecca,
My heart goes out to your and your mum! I know how your she must feel...wanting to be active but is unable to get out of bed because of the profound fatigue associated with CFS.
Some doctors actually believe that CFS/ME is a type of autoimmune disease and that is why sufferers experience the same symptoms as those with lupus and rheumatoid arthritis.
Since you mum already had been diagnosed with a recognized autoimmune disease, I would encourage the doctors to treat her for that.
Also, depression is often associated with CFS/ME (so I would not be opposed to them treating your mum for it, as well) as we feel so exhausted at times, we can hardly function. In turn, that makes up very depressed and lethargic! It feels as though we are beginning the day with our battery only charged 1/3 of the way, and by the time we try to get some things accomplished, our battery is has run out!
I've heard some promising things about a drug called Low Dose Nalproxene or LDN. If you like to do Facebook, you can join the closed group and find out more about it. They are using this drug to help treat many autoimmune diseases including CFS. I have heard that many people get relief from some of their symptoms.
Your mum is very lucky to have such a caring daughter. I bet she appreciates you very much. Good luck to the both you. Please keep us posted. KPD
Hi Rebecca, sounds like both you and your mum are having a pretty rough time of it! It's so hard watching someone you love suffer and not know what you can do to help. She's lucky to have you watching out for her and being there as a support. 
There seem to be lots of illnesses that can cause the 'fatigue' element of chronic fatigue. One of my family has parkinsons, which comes with its own wonderful array of symptoms, including fatigue. There is definitely common ground there that I can recognise and understand from my CFS, despite us both obviously having other quite different symptoms from each other.
All I mean by this is that there are a great many things that might potentially be causing your mum's problems - hopefully it will turn out to be something that the medical profession has a good fix for!! CFS is a diagnosis of elimination, so it takes a long time (several months at least) to get a diagnosis. Even if you're sure that's what it is, ruling out other things is the route you'll need to take anyway.
On the anti-depressant front, I was prescribed these automatically when I was diagnosed with CFS, as it's a depressing kind of thing! I wouldn't have said that I was depressed at all at that point, but once they kicked in I saw a big difference. I think I'd been slipping downwards without noticing. They did take two or three months to have an affect though. Hopefully the prozac will give your mum a boost.
I hope you both get answers soon x
Is She taking gabapentin? I was and what your saying sounds familiar. Look to meds and make Dr explain his thoughts to you. Do your own research on what She is taking and dosage amount. May just need to lower it some. Seems it's always increased and no thought to decrease. Gabapentin seems to be all the Doctors favorite go to drug. It's extremely dangerous and will make you sick. Watch out for suicidal ideation! Good luck!
Hello
Thank you all for your compassionate replies. ❤️ I've thoroughly read through all of them
I too am hoping is just a side effect of depression. It makes sense when you say this can also be related to an autoimmune disease as this is what mum's currently suffering with.
KPD- I'll look into that and perhaps suggest this to mum. As I don't think we've ever come across that drug.
From reading back on my post, I hope you don't think I'm jumping to the bullet and want to quickly diagnose my mum with CFS as that would be offensive to everything you've all been though. I'm just looking into a possibility.
I will contuine to keep you updated. Even if I don't post back within days, if anything else has been found/diagnosed.
Thank you very much x
Hello,
There's been no progress since my last post. Mum did go back to the Dr's to see a different one, however he's certain it's depression. I don't know 😰😪 it's so hard, when I look at mum, she's so weak and fragile, so exhausted to do anything. I can't understand how someone can sleep for so long, yet still be so tierd if it's depression. 😢
...I'm trying my hardest to take mum out for coffee but she declines the offer. Should I just let it be, don't know if it's helping or not. Her mind seems a bit all over the place too, bit confused.
Rebecca,
I'm so so sorry to hear that things are not improving with your mum! I find it hard to believe that this is depression (but I'm not a doctor) causing her to remain in bed. Does she want to do things but is simply too tired? Has she been seen by a psychiatrist who specializes in the brain rather than an internal medicine doctor?
I know that part of CFS is one really wants to get out and be active, but the fatigue often prevents us from doing so. Even on a bad day, I often feel better in the evenings and start to think about all the things I want to accomplish the next day. Is this happening with you mum or is she lethargic all of the time? Karen
Hi KPD,
Thank you. Yes, she does want to do things, however it's just physically impossible with what little energy she has. As of yet, hasn't been referred to see a psychiatrist, perhaps that'll be the next step when she's goes back to see the Dr in a week and halfs time.
The other night she seemed to have a little more energy than what she usually has exhibited, but that was a one time occurance, and she went to bed quickly after.
Hi again Rebeca,
The fact that you mum wanted to get out and be active, makes me think that this is not only depression. I do hope that she ends up seeing a good therapist. Psychiatrists sometimes know more about CFS and other chronic illnesses.
Since there is no cure for CFS, they often treat the sleep with antidepressants, which help promote REM sleep. Some believe that people with CFS are not getting the proper sleep and that is why they are so tired. A low dose tricyclic anti-depressant helps me fall asleep and stay asleep most of the night.
Maybe a good therapist can helps by suggesting other ways to help to improve the quality of your mum’s life. Meditation works for some along with vitamins, which include Vitamin D and Vitamin B12.
Pacing is so important and is the key to feeling better for many. I know it helps me. I try to move around and do a little bit of something for a few hours a day and then rest in between those times. All of these suggestions depend on the condition your mum is in, though. Luckily, I have a more mild case of CFS and am able to do about 25-50% of what I used to be able to do. Some sufferers are homebound, while others are bedbound. Also, you said you mum suffers from rheumatoid arthritis. This could be causing many of her symptoms. Are they treating her for those? I hope you find some answers soon. Please keep me posted. Karen
Karen, thank you very much for your informative post. I'll certainly suggest to her about seeing a psychiatrist.
Weeks leading up to feeling like this, she would rarely get a good nights sleep. Regularly waking up. Feeling tired in the day, taking naps.
I will keep you posted, on any progress 🤞
Again, very much appreciate your advice. I'm reading up on this, however much helpful reading from someone who's personally experiencing this.
Rebecca
You're so welcome, Rebecca. I'm wishing you the very best. Please keep me posted. Karen
Hi Rebecca,
You are such a compassionate and caring daughter. I am sorry that your mum is suffering so much. I was wondering if all the medication that your mum has been taking through the years could have depleted her minerals, as the body runs on minerals.
Alot of medication do this to our bodies and doctors don't even care to tells us or they are unaware. I wasn't on any meds before having CFS besides everday stress from work and life. Alot of my tests are always on the low end of normal, never optimal but always in range.
I sometimes wonder if I got my levels in the upper end of normal, would I feel less fatigue. Doctors don't want to hear it, I asked and they tell me I'm in range don't worry about it.
So that is something I am working on right now, pacing and getting better sleep. I am doing audio meditation from an app on my phone for a couple days now and it had helped lift my spirits up. I don't know how to meditate but the step by step audio is amazing.
I hope things start to improve with your mum.
Hi Taro,
Thank you. I didn't know that the drugs could deplete minerals from the body. However, I have thought all along, that's my mum's in this position because of all the drugs she's been putting into her body . I know a few users have advised that, perhaps getting the rheumatoid arthritis under control first. But that means more/different drugs.
Alot of my mum's test are normal, or just below too. But still not low enough to question it as a problem. I do feel strongly that she's feeling like this because of all the drugs.
Thank you for your reply.
Back to the Dr's today. Same Dr she has been seeing. He's assured her she will get better and has prescribed her sleeping tablets 😫 Has another appointment next week. She's sat here sighing, no energy not knowing what to do with herself. Dr has advised not to sleep in the day.
Hi Rebecca, the time frame for me has been similar to this, see my main post as to history however it started with unrefreshing sleep, going straight to bed after work, crawling through the week where I'd sleep all weekend just to be able to do a week in work and then my attendance slipping in work because I got so tired which all made me so incredibly low as I felt I was a failure and had no quality of life that at first presentation to the doctor 4 weeks ago (been signed off work since) I was depressed severely however was able to explain with difficulty that I'd got so down due to the persistent tiredness, I love to go to work and coffee and live my life, the lack of energy stops me which is very depressing.