Think I have CFS - no support from GP or anyone else in my life

[Matai88]

Hi all

I think I might have CFS, however I'm not entirely sure as it's never been diagnosed by a doctor. The closest I've been to a diagnosis was around 2 years ago when I was told that my medication was creating "CFS like symptoms" by my GP, however he never provided any more advice on what to do about it. I changed GPs and medications not long after that and felt OK for a few months. Then the fatigue hit again. I haven't felt 'right' since Christmas last year. Sometimes I feel good for weeks but most of the time I'm tired, aching (muscles and joints that feel like they are about to explode), confused/foggy and I feel worse after exercise, even just a 30 minute walk. I tried a gym trial the other day and after 15 minutes of lifting light weights I was done. It took me 3 days to stop aching and feeling tired.

A year ago I could ride my bike to and from work (15km each way) most days, easily do a couple of hours of yoga a week, walk for 60+ minutes and hike for a couple of hours. Now I'm lucky if I manage a 20 minute slow walk. I try my best to do an hour of hatha yoga once a week but sometimes I'm just in too much pain and too exhausted. Most of my days consist of coming to work via bus and train, then going home and collapsing on the couch. I'm depressed, grieving for who I used to be and intensely jealous of anyone in good health. I've gained 8kg since I started feeling like this.

I have bought up the fatigue and pain with my doctor three times now. This usually results in my iron, vitamins and thyroid being checked (always normal) and being sent to the psychologist. My psychologist says I'm depressed but what if that's only because I have this fatigue and near constant pain? I also get monthly migraines which don't help me. I try my hardest not to dwell on my health, I use relaxation techniques and don't push myself anymore but I'm steadily feeling worse and worse.

So what do you do when you have little/no support from your GP, or for that matter anyone else in your life? Whenever I try to talk to family and friends I'm met with sympathetic comments then just awkward silences or a change of subject. I'm beginning to think everyone (including my GP) thinks I'm a hypochondriac. I'm suffering here, I WANT to be healthy, active and fit, I WANT help but I don't know how to get it or who to talk to about it.

😞

[romantic_thi3f]

Hi Matai88,

Thank you for posting and I'm sorry that things have been so hard for you lately.

I've had health issues for many years and I can definitely relate to the feeling of not having a support team, feeling ignored and awkward silences. It is an incredibly frustrating battle and the idea of Chronic Fatigue Syndrome only adds to this because it's such an invisible condition so people are silent battlers.

I'm sorry that your GP isn't supportive of you and can imagine how frustrating this is. Unfortunately though it's worth noting that Chronic Fatigue Syndrome does not have a single test; it is only diagnosed through the process of exclusion. I'm assuming this may be potentially why your GP has pushed you towards the psychologist.

It is possible for a person to have Depression and not CFS as well as CFS but not depression. A lot of people I know with CFS have Depression given the chronic pain and fatigue. I also know a lot of people with Depression who have severe fatigue and pain. Whatever the condition is - it is both very real. People who say or suggest that you are a hypochondriac simply do not understand the struggle you are clearly facing.

With all that said, I do encourage you to continue with the psychologist. The idea of therapy should be about helping you to live the best life you can with the resources you have. There are also lots of other tools/therapy techniques that can be explored such as mindfulness, exposure therapy, pacing and CBT.

I also encourage you to get help for the possible CFS. The reason I say this is because there is a lot of non-pharmacological treatments that can help you manage both your pain and energy levels better - so in a sense you do not need a diagnosis to look at further treatment or management options. Often too it can be about finding what works for you; if a 30 minute or 20 minute slow walk is too much, maybe it might be 5 minutes, or just around the house. There are also lots of other strategies you can put in place for your energy (such as meals and work modifications). https://emerge.org.au

[Matai88]

Thanks.

It's so frustrating as some treatments require a confirmed CFS diagnosis from your GP. I don't really want to switch GPs again, my current one is the 4th one I've had in 5 years! I've tried/keep trying to treat my depression, migraines, fatigue, aches and related symptoms with medications, nutritionists, CBT, hypnotherapy, naturopaths, herbalist/Chinese medicine therapists, yoga, meditation, person training and osteopaths for the last few years only to end up back at this spot. I'm so sick of people taking my blood, I feel like a human pin cushion. I've had MRI's and cat scans. All the tests always come back normal. I've seen my psychologist for the last 3 years, I go away and feel OK (mentally) for a few months, ready to tackle my health, then I'm back again feeling like rubbish (mentally and physically). I'm just at my wits end, I'm sick and tired of being sick and tired, trying everything ever recommended to me and getting nowhere.

[romantic_thi3f]

Hi Matai88,

Thanks for posting back and good to hear from you again.

I can hear the frustration of trying all these things and not getting anywhere. It sounds like it's been a huge adjustment to want to explore all these strategies even though they seem to take so much time, effort and probably money too.

One thing that I am wondering though is how long you've been seeing your GP; have you discussed your thoughts about the CFS? In your first post you said that you were sent to the psychologist, but I also know you've had lots of tests done. What might be holding him back from this diagnosis? Are there other things he might be thinking of?

I also wonder too how frequently you've been seeing the psychologist; as seeing someone every few months does not sound very frequent at all, especially given all that you've had to deal with. Do you know what the plans are for the future in seeing them (what he/she wants to work towards); have they given you any 'homework'?

Certainly stress and depression can be a major factor in how we feel; our energy, pain and fatigue levels can all mimic CFS just because it's our bodies only way of coping. Psychologists can often be very helpful in giving you lots of techniques (which don't require you to be a pin-cushion) that can help try and improve your quality of life.

I also wonder if you've considered other online support groups that might be more specific to what you're going through - you did mention constant pain and Chronic Pain Australia have forums for chronic pain (no diagnosis needed). This might be a great way to chat to people and find others that can understand - http://www.chronicpainaustralia.org.au/index.php/forum-discussions-3/public-registered-users

[Matai88]

Thanks for your reply, I'll try my best to answer your questions.

How long you've been seeing your GP? For 1 year now.
Have you discussed your thoughts about the CFS? Yes, multiple times, including yesterday - I am met with either silence and a suggestion to up my medication dose, or told to talk to my psychologist.
What might be holding him back from this diagnosis? I have no idea.
Are there other things he might be thinking of? I get the feeling he thinks it's all in my head.

How frequently you've been seeing the psychologist? I've been seeing her for 3 years, firstly for anxiety/panic attacks, then depression. I use the 10 appointments I am entitled through via medicare. The longest I've gone without seeing her is 6 months.
Do you know what the plans are for the future in seeing them (what he/she wants to work towards) ... have they given you any 'homework'? She gives me short term goals to work towards such as going for a walk a couple of times a week, using the Smiling Mind app and going to bed/waking up at the same time every day. The long term goal is to get me exercising every day, and living free of panic attacks and depression.

I haven't considered other online support groups yet.

[romantic_thi3f]

Hi Matai88,

Thank you for posting back. Appreciate you answering all the questions; hope I haven't bombarded you with them!

It sounds like your GP has been thorough in the year that you've seen him; with MRI's, CAT scans and lots of blood tests. I feel like it's probably important to emphasise that if your GP thinks it's all your head that doesn't necessarily mean he thinks you are making this up. What's going on for you is very real - it just might not necessarily be explained by a biological cause. I know that this can be confusing and I think GP's don't often know how to have these conversations. As someone whose struggled with health issues for years I have a better understanding of the mind/body connection now and it's certainly not a simple one.

I'm glad that your psychologist is helping you work towards these goals and I agree that they are pretty important. Have you been using the Smiling Mind app; are there other techniques like relaxation/mindfulness exercises that might be helpful?

I encourage you to chat to the psychologist next time you see them about how you've been feeling; they are there for you and do want the best for you. She might be able to help you with some more hands-on advice as well.

For me personally one of the techniques I used was exposure therapy; the idea behind it is that we expose ourselves to the situation in tiny baby steps until it becomes easier and easier. Joining a gym for example was probably a big step, and it sounds like maybe a 20 minute walk is too (from your first post). Maybe there's something before that that isn't going to be too uncomfortable or painful? A smaller walk might be an option, or yoga;- even bed or chair exercises can be a good place to start as you can stop and take a break whenever you need.

[springrolls12]

Hi,
If you have not been tested for tick borne illnesses such as Rickettsia, please get tested. I have had CFS as of recently, and doctors did not think to test me for any tick diseases as I live in melbourne, and it's meant to be only prevalent in QLD. However I am positive for rickettsia and now I can finally treat what has been causing this problem.

[Constant_gardener]

Hi Matai88,

its been a long time since you've posted. I saw the title of your thread and it resonated with me. Since a virus about 18 months ago I've been ill with 'possibly' CFS. I had to ask my GP outright if that's what I might have. She's been good in other ways, done all the tests, again and again, as kidney function and liver were off for a while. I've had a heart scan, a heart monitor, a tilt table test. It was found I had a heap of gallstones, so the gallbladder is now out. I've been referred to a psychologist, and seen her three times so far.

Because I've assumed ever since the post viral fatigue condition that CFS is what I had ( I have a friend in another state who's had it 11 years, cost her her teaching job) I've been treating it as such, and got into pacing with a Fitbit, etc.

I get why GPs are reluctant to diagnose, as it might be something else, but lack of early diagnosis means that people push beyond their limits and make their condition worse. All of have learned the hard way not to push ourselves too far physically and mentally, resulting in PEM and back to bed for weeks or months. I still struggle with getting the balance right, and sometimes get so frustrated I have to vent! At the start I was constantly dizzy, could not even weed my garden for one minute, could not walk more than 100 yards. I've improved, though time or pacing I can't tell, but would so love to be able to walk briskly, or uphill. I sometimes lie on the grass verge to let my heart rate go down so I can keep going. I've been to a cardiologist, and my heart is perfect. Laughing is meant to help. But I'm so over it. CFS stinks.

I think there should be leaflets from Emerge Australia in all medical practices. If not for the Internet and my research skill I would be floundering. I'm in a local CFS support group. It helps to connect to others with your condition. Many of us have not had a definitive diagnosis, but it improves my ability to live a semblance of a normal life if I use the strategies recommended. Acceptance, adapting your life to the limitations. Sounds like you're doing a lot of that. I do yoga Nidra, lie in the corpse pose a couple of times a day at least, and breathe slowly, try to calm down what I assume is my sympathetic nervous system dominance.

got an email from my friend with CFS. She was having a cup of coffee on her way to an anti Adani rally. It gets better, she told me at the beginning of my illness. I have to try and believe that is true.