CFS/Fibromyalgia

[jennielouises]

I’m back at work part time at the moment after suffering what I think was a breakdown (depression and my anxiety got worse along with a million physical symptoms). I am now extremely tired no matter how much I sleep. I also had that problem when I was ill. It has happened before and I have noticed that fatigue is one of the symptoms I get after a stressful event. I think my body is just burnt out.

Along with the fatigue I get headaches, nausea (which sparks off the anxiety as I am emetophobic), stomach ache, IBS, wind, sore eyes and a sore throat. In the past it has been mentioned I might have CFS or Fibromyalgia and although the GP has acknowledged that I meant to criteria for those, they mainly focus on the anxiety and say that causes everything. But right now my anxiety is improving but I am still so fatigued. It ALWAYS gets worse at this time of year and has relapsed badly three times since I had Glandular Fever in 2005.

To me it seems I have either of these and not just anxiety. It might be that when my anxiety gets bad that I then have a relapse but I also think the fatigue causes the depression and makes the anxiety worse.

My emetophobia has a lot of the same traits as health anxiety. So I do tend to focus on my health and therefore too afraid to ask the GP about this and to Dr Google it. That’s why I am asking the advice of people on here. As I said the GP has said I meet the criteria for Fibro before and one said in 2009 that it seemed I was having a flare up of the virus that causes Glandular Fever which can happen time to time. The reason I want to know is I can’t treat the fatigue unless I know what is causing it.

Thanks

Jen x

[anthrokid]

Hi Jen,

I know you don't have a 100% confirmation, but there are a lot of things that really make a difference to CFS/fibro symptoms that you could use to help ease your symptoms :smile:

1. Get into a regular sleeping pattern.
2. Expose yourself to natural light for 10-15 minutes when you first wake up.
3. Avoid naps - and if you must have a rest, limit yourself to a 20-30 minute nap, no longer.
4. Exercise daily - it doesn't have to be vigorous exercise, even a 15-20 minute walk can help.
5. Eat healthy - lots of fruit and vegetables.
6. Take vitamins - some vitamins can help reduce symptoms, particularly if you are low in certain ones. Check with your GP as to whether they think any may be beneficial for you.

[jennielouises]

Thank you. Do you think it sounds like cfs though? I can't ask my gp as they think I'm a hypercondriac!

[zippy]

I was diagnosed with m.e/cfs 10 years ago after being ill for 4 years. The trouble with it is they only diagnose it when all other tests come back ok.
I have had every test over the years and i too was made to feel like i was imagining it until i got bad vertigo last year and had another brain scan which revealed about 3 lesions. Had a lumbar puncture which was negative so still no 100% diagnosis really.

[jennielouises]

Ok so I really think my recent anxiety issues have causes chronic fatigue like before. I have had symptoms on and off since I had glandular fever and it always follows stress or anxiety. I’m so tired and feel so sick and can’t concentrate. I have IBS and acid reflux and feel like I have the flu all the time. I focus on feeling sick so have always said that to the docs but I honestly think it’s mainly fatigue. But how can I get a diagnoses when the gps think I’m a hypochondriac?

[anthrokid]

It could be CFS, or it might not be. Only a doctor can really give you a thumbs up or down for that. In saying that, the same methods I suggested should help make a difference to the fatigue, whether it is due to CFS or not.

[blondielady]

When I was a kid there was a strong suspicion that I had CFS. I came down with a high fever and was basically delirious one night. Next day I felt ok. 3rd day I went to school, came home with a low grade temp and swollen glands. After a week of swollen glands, my mom took me to the doc. They did no throat culture and told me I had strep throat. I took the antibiotics and got better for about a week, then was sick again. I went for about 8 months of being weak, tired, swollen glands, sore throat on and off, stomach problems, depression, no appetite, etc. My labs kept coming up fine other than occasional slightly elevated white cell counts and occasionally anemic which I took iron for. The doctors were all pissed.. they just wanted me to go back to school with a 99.1 degree fever (thats what it always seemed to be) telling me that is a normal temp for some people. I felt awful and I was so tired and weak all the time so they just told me to eat. Eating made my stomach hurt. I couldn't sleep very well at night at all... had some nightmares and some hallucinations. Yet... all those labs were normal so I was fine.... according to docs.

What ultimately helped me to get better was to force myself to eat little bits (well my mom made me do that... but you know). I also had rewards for doing more and more each day, so I was able to push a little harder each day. I'd go back to school for 1 hour, then 2, then half day, then eventually full days. Once I was going back to school full days, I quickly bounced back and it was like the sickness never happened. The doctor did eventually give up and just say I must have CFS, and they did absolutely nothing for it (this was back in the 80s). At that time, people would talk about having it for years and years so I thought I was just going to be sick forever.

Looking back, I think CFS probably comes from a virus that attacks the brain. It definitely had a lot of brain-affecting symptoms like sleeplessness, nightmares, depression, etc. My mom kept a picture I drew for the doctor to show her how I felt and when I looked at the picture as an adult it scared me... like I could see that my mind must have been in a bad place at that time. It was a very frustrating illness.

That said, I'm a very hopeful person and I encourage anyone who thinks they have CFS to not think they are doomed to be sick forever. I have been going through some anxiety lately and it almost felt like a relapse of this thing I had as a kid.... stomach issues, can't sleep, tiredness. However, I pushed through by doing a lot of EFT tapping, meditation, and basically just telling myself that I need to do little things here and there to keep from becoming inactive and sick. Even if I'm sitting down most of the day I make it a point to get up and be moderately active for at least 20 minutes. It helps a lot. I feel like I accomplished something I wouldn't have unless I'd made myself, and that gives me a boost. So whether its CFS or it isn't, just do what you can, take rests, and force yourself to eat healthy things and get a little exercise. Its the best medicine for things like this. I find playing with my pets helps too.

[anthrokid]

Great advice blondielady. I also have CFS and Fibro, diagnosed just after I finished school. It is interesting that you talk about a 'disease that attacks the brain', because although they suspect my CFS was triggered by an epic bout of glandular fever, the CFS specialist I saw spoke about this idea that CFS may happen when a seemingly 'normal' virus somehow manages to attack the brain or trigger some reaction in the brain. It's all very fascinating.

I am very lucky that at the time of my diagnosis I was taking a 'gap year' between high school and university, and living at home. My mother was amazing for me - always encouraging me and sometimes even forcing me to get up and go out when I was in pain and exhausted and sick. Looking back, that is what made the biggest difference, and that's how I continue to live and manage my symptoms. Like you, I'm also very hopeful and don't see CFS/fibro as some awful illness that limits what I can do. I've studied full-time (for 5 years now) and worked 3 casual jobs since my diagnosis, and I won't lie and say it is easy, but it is also very possible if you manage the symptoms well and push through the mental barrier CFS seems to create. It really is the most basic changes (exercise, healthy eating, good sleeping pattern) that is the best medicine for CFS.

[cattia]

When my anxiety and depression were at their worse in the late 90s I really thought that I had CFS. I was ill for months and was always so tired and spaced out. Every time I got ill I would be ill for ages afterwards with fatigue. Eventually I got better as my mental health improved with medication and CBT my health got stronger too. Even now, I feel that somehow my body and mind are too closely connected! When I get run down and get a virus it sometimes sends me into a cycle of fatigue which sparks off my anxiety and sometimes it lasts several weeks. I think in my case the fatigue was probably caused by the mental health issues.
My best friend had CFS for seven years. She also feels that hers was triggered by a virus that came at a very stressful time in her life. She would get temperatures, sore throat, headaches and swollen glands when she did too much. She is now totally recovered. She didn't work for a long time but she gradually built up her activity with regular rests (not sleeps) at the same time every day. She made changes to reduce stress in her life and changed her diet, cutting out alcohol and caffine and taking herbal supplements.
I also have a friend now who has recently been diagnosed with CFS. Hers also followed glandular fever but is a little different from my other friend as she has spells of being fine but then she will relapse and have to go to bed for a few days with a fever, sore throat and terrible flu like symptoms. She has found that drinking home made juices daily, reducing stress, and resting when she feels a relapse coming on have massively helped her and she mostly lives a normal life now.
Anyway I'm rambling, but having had some experience with this I believe as the others have said, that if you DO have it, it's an illness that can be really drastically improved with the right management. I also think though, that it's worth considering that the symptoms of depression and anxiety do very much mimic CFS.

[yenool]

Some doctors will argue that fibromyalgia/CFS/M.E. are actually anxiety/depression/mental illness that is presenting with mainly physical symptoms.. Others think there is an underlying physical cause but don't know what exactly. Most seem to agree there is a significant psychological component in most people and the best treatment is often a combination of pain killers, antidepressants, exercise, pacing and CBT.

The other problem is there are no simple diagnostic tests for these conditions, only tests to rule out other conditions that might cause the symptoms experienced. Once they have excluded everything other known disease they might consider a diagnosis of fibromyalgia. Although fibromyalgia is pretty much just a descriptive term that means muscle and soft tissue pain, so the 'diagnosis' doesn't give any explanation or bring you any closer to a cure.

I've found doctors in general are not much help in diagnosing a cause for excessive fatigue. They may do blood tests but run out of ideas and dismiss symptoms if the common tests are normal.

I have experimented and found taking daily Vitamin D, B Vitamins and Fish oil supplements helpful for fatigue. Improving diet, daily exercise and NOT sleeping during the day unless physically so tired I'm about to collapse has also helped.

[Serenity1990]

As I understand it ME/CFS is probably a variety of under-understood conditions. What I'll (insensitively) call "real" ME has become much better understood in very recent times. It is known to have an autoimmune element and MRI imaging has shown that autoimmune ME patients have far less white matter than normal controls, and it can cause lesions. These people tend not to get better.

However, confusingly "Chronic Fatigue Syndrome" is also thought to be a symptom of various other illnesses, from "functional" neurological illnesses and mental illnesses to various other physiological diseases; in such cases MRI doesn't show the structural changes described above.

As such, many people differentiate between "ME" and "CFS" using the vague categorisation above. Others say that as they have exactly the same set of symptoms and neither are fully understood it's quite correct that they should be categorised together. However what's certain is that given the definite structural changes that can be observed in some types of the illness it is certainly incorrect to write it all off to something like anxiety.

However, to make things even more confusing anxiety can cause very similar symptoms. It can cause extreme fatigue and a whole host of neurological symptoms similar to ME/CFS. It can also make you hyper-sensitive to pain, just like in Fibromyalgia. In fact in my case my original diagnosis was "Post Viral Fatigue Syndrome" which after six months becomes classified as ME; however extensive testing ended in the realisation that I had no signs of current or recent neuroinflammation, and an EMG discovered that my symptoms were actually caused by BFS (a type of peripheral nerve hyperexcitability) which can be caused by a past virus or more commonly - you guessed it - anxiety.

Now I'm not a doctor, so please don't take any more than this from my ramblings: anxiety has real chemical and structural effects on the body. It can mimic all sorts of horrible and scary things, and some less scary stuff too. Let the doctors do their testing, but in the absence of any abnormalities what you describe is well within the scope of anxiety symptoms.

[anthrokid]

Yes, unfortunately there is still no firm understanding of what exactly causes CFS and Fibromyalgia, but there are some really interesting theories, and so far it would be suggested that CFS and Fibro can be caused or triggered by a myriad of things.

I agree with what has been said in that anxiety and depression cause very similar symptoms. In fact, in diagnosis of anxiety and depression we ask about changes to sleeping pattern, eating, fatigue, etc. because they are such prominent symptoms. In this sense, I think it would be very difficult to give a diagnosis of CFS whilst suffering from anxiety of depression, just because they cannot be 'outruled' as causes.

In my case, the diagnosis of CFS and fibro was quite easy - I did not suffer from any mental health issues at that time aside from the CFS and Fibro symptoms, and my doctor literally tested for everything she could think of. I've had tests for my heart, my head and everything in between. It was only several months later when I had quite a traumatic experience that I began to suffer with PTSD and panic, which have been resolved for a few years not, yet the CFS and Fibro symptoms continue. I have regular 6-monthly checkups with my doctor for bloods and symptom checks just in case a dormant condition that causes my CFS/Fibro may have become active - but thus far every test is clear :)

In saying that it is difficult to diagnose in people with anxiety and depression though, it doesn't mean that you can't use the same things to improve your fatigue and pain anyway :) Whatever the cause of your fatigue and pain, whether it be CFS, fibro or anxiety, the same methods should help manage the symptoms.