New to the forum and worried I might have CFS/ME

[szenn]

Hello my name is Senna,

I am 40 years old and I am a single parent from London UK.

I have been under a lot of stress lately: My boyfriend had a heart attack a few weeks ago, my dad is unwell and various other horrid stuff.
About four months ago, I started to have problems sleeping after a particular stressful episode. At first I could only sleep a few hours per night. Now I can sleep 3-5 hours per night straight but I wake up sometimes sweating and then fall back asleep for another hour. I don’t seem to be able to sleep more then five hours tops. This just seems so weird.

I feel tired upon waking, but not ridiculously so.

Some days (about twice per week) I get really bad aches in my arms and thighs .I have started to get tension headaches daily. Both respond to OTC painkillers.

My hands and feet also feel tender and feel like they are burning.

My bladder is weird too. I don’t urinate that often but I can be dying to go and then I don’t seem to produce much.

I work in the mornings, walk my dog my days for an hour or so.

I am wondering if I have CFS? I know it can develop gradually after stress.
I don’t think I have PEM, if I do it doesn’t last 24 hours. I don’t have tender lymph nodes or a sore throat. I can do the tandem stance but sometimes feel shaky when I walk. Cognitively I am fine. I have no memory problems and can read, follow conversations etc. My temperature is usually normal although today it is 37.4. Normal blood pressure (my doctor says excellent BP).

I have lost my appetite and now weigh 28 iilbs less then I did four months ago.

I have seen lots of doctors because the sleep issue is really bothering me so much. None of them think I have CFS. My GP says CFS starts after a virus and those afflicted are extremely fatigued. I did have a chest infection in December but it only lasted a week and was not that bad. My thyroid, B12, blood sugar, ESR (11) is all normal. I saw a Perrin Osteopath, who sad I did not have CFS because I did not have the Perrin Point or other markers that correspond with their diagnostic method for CFS.

I even wrote to Charles Lapp who thinks I don’t have CFS but then I had a Skype consultation with Derek Enlander who thinks I do have it. Although I did not think he was very thorough in his investigation and we could barely see each other. He did not ask me about PEM, sore throats, fatigue or anything and he told me my white tongue was Candida and it has been confirmed it is not.

I am so confused and so worried about what is wrong with me. I wake up with outrageous anxiety and am obsessed with my health and having CFS. I don’t know what else I could be suffering from. My doctors think I have General anxiety disorder (GAD) and my symptoms certainly do correspond but I have never been an anxious person in the past. I have been prescribed Citalopram, which I took for three days, but it made me so tired that I stopped.
I think I am going insane seriously. This consumes my life.
Does anybody have an opinion?
I am not on any medication.
Thanks for listening

 

[Nielk]

Hi Senna,

Welcome to the forum.

I am sorry that you are suffering so much. I can't really help you with the diagnosis since I am not a medical professional. Did Dr. Enlander say why he did think that you have CFS? Did he recommend any treatment for you?
It does sound to me like it could be GAD. I am not familiar with Citalopram but many medications like that one have an initial side effect of fatigue which dissipates after time.
I am sorry about all the stress in your life and the worry about the uncertainty of your health.

 

[Beyond]

One thing that develops for sure from stress its adrenal fatigue. And it has as a symptom bad insomnia. Lots of people with "CFS" have adrenal fatigue, most of them among other things, comorbid we could say. Checking 24h 4x saliva cortisol could be useful.

 

[szenn]

Thank you so much for responding Nielk, as I am so worried it really means the world to me that somebody cares enough to take the time to listen.
Don't know why Enlander thought I had CFS, maybe the sleep problem but I know that is common in Anxiety too. He kept saying you shouldn't be waking up with a burning feeling in your hands and I said but I don't but he didn't seem to hear me.
I told him the burning was worse when I was anxious and also the urine problems.
He had no more information than Dr Lapp. I think he thought I had Oral Candida too. I did tell him it has been ruled out (3 times actually) but I sent him a photo and he said it was Candida.
To be honest I spent more time talking to his secretary.
I was not impressed. It cost a lot of money and he spent twenty minutes talking to me.
Seemed kind though.
Dr Lapp said it was unethical to diagnose someone that way.
Even so I am still so confused as I do get bad muscle aches but my doctor said this is caused by adrenalin being pumped to the muscles and not used. I actually walk every day.
Anyway sorry for rambling on and on

 

[szenn]

Thanks beyond. I will try and get that checked out if I can

 

[Undisclosed]

Welcome to the forums.

Your bladder symptoms could be an episode of interstitial cystitis. You might want to get that investigated.

Kina.

 

[szenn]

Thanks Kina, I am seeing a urologist on Friday

 

[Valentijn]

szenn
It really doesn't sound like ME/CFS. But we do get all sorts of "interesting" symptoms, and if you ask about them on the "Symptoms" board (or do a search there) you might get some good answers. Though it might good to mention your uncertainties about your CFS diagnosis to avoid confusion, if/when you do post there.

 

[szenn]

szenn
It really doesn't sound like ME/CFS. But we do get all sorts of "interesting" symptoms, and if you ask about them on the "Symptoms" board (or do a search there) you might get some good answers. Though it might good to mention your uncertainties about your CFS diagnosis to avoid confusion, if/when you do post there.

I agree it's a weird one.
I do know that I am hyper vigilant about my body at the moment and consumed by not sleeping.
I have posted on anxiety boards and most users there think I have GAD.
Just wish I could sleep.
My symptoms started with not being able to sleep.
Literally stopped sleeping through the night all of a sudden one evening.
Still have loads of energy just scared to use it in case I get PEM.

Do people get CFS gradually?
I don't full fill the Canadian criteria

 

[soxfan]

I thought at one point I was suffering from anxiety and looked it up on google and you wouldn't believe all the symptoms that GAD can cause. It was called anxiety center I think. Your symptoms sound so much like the ones they listed and there are over 100 of them.
To me it doesn't sound like CFS at all but that is my opinion. I will look up the address of the sight and post it and you can see the symptoms. Burning skin feeling is one of them..along with fatigue and sleep.

Okay it is www.anxietycentre.com. You will be amazed at all the symptoms anxiety can cause

 

[caledonia]

I had GAD before I had CFS. This is not to suggest that one leads to the other. What I'm saying is that I have had separate experience with both, so I have a good idea what symptoms go with what.

I would really have to say that you have GAD and not ME/CFS. You're going through a great deal of stress, and this can be a normal response.

I have had a lot of experience with anxiety, anti-depressants, supplements and so forth.

My suggestion would be to avoid anti-depressants and benzodiazepams (tranquilizers like Valium) if at all possible.

I would further suggest to find a psychologist who you can talk to about how to manage your stress and anxiety. They should be able to help you change your thought patterns so that you're not snowballing your anxiety into higher and higher anxiety. It's often helpful just to talk to somebody in private. Learning to meditate and practicing that daily can also be very helpful.

Then I would suggest trying various calming supplements. You can try things like GABA or theanine (they both are very similar, so either one is fine). Magnesium is another good one - forms such as magnesium glycinate or magnesium taurate, etc. are the best. Avoid magnesium oxide, it doesn't absorb well, so it's just waste of money. Relora, which is an herb, can be a good one to lower your cortisol, which is probably high (and would explain waking up at night in a sweat).

If you can, consult with a naturopath or holistic doc for the supplements.

Make sure to eat a good diet - eat real whole food made from scratch if possible, not processed convenience food and junk. Stop any caffeine or anything stimulating, such as coffee, tea, chocolate, Red Bull, sugar, etc.

Keep taking those walks to help burn off adrenalin.

Hopefully all those things will add up and help you get through this stressful period - good luck!

 

[Bead Dog]

Maybe re- check your B12 status again with an MMA test. Also have you had your folate levels checked?

 

[Ema]

I agree with Beyond that a saliva cortisol test would be a good idea. It sounds like your HPA axis could have become dysregulated due to the stresses you've been experiencing. Antidepressants may not be the best choice in this situation as they can have an effect on cortisol levels as well. It sounds like your cortisol levels may be high at night (reversed from normal circadian rhythm) and that could possibly be a reason for trouble sleeping.

I would be careful about strenuous exercise and focus on restorative work like walking, stretching etc (ie not marathon running or extreme weight lifting). Exercise can also increase cortisol and might cause more issues if that is indeed the problem.

Anxiety sometimes responds really well to magnesium supplementation. You might look into this and see if it helps also with the muscle aches and pains.

I'm sorry you're going through all this...hope you are able to find some better answers!

Ema

 

[szenn]

Thanks everybody for the advice. I will look into to it all your suggestions.

 

[szenn]

I had GAD before I had CFS. This is not to suggest that one leads to the other. What I'm saying is that I have had separate experience with both, so I have a good idea what symptoms go with what.

I would really have to say that you have GAD and not ME/CFS. You're going through a great deal of stress, and this can be a normal response.

I have had a lot of experience with anxiety, anti-depressants, supplements and so forth.

My suggestion would be to avoid anti-depressants and benzodiazepams (tranquilizers like Valium) if at all possible.

I would further suggest to find a psychologist who you can talk to about how to manage your stress and anxiety. They should be able to help you change your thought patterns so that you're not snowballing your anxiety into higher and higher anxiety. It's often helpful just to talk to somebody in private. Learning to meditate and practicing that daily can also be very helpful.

Then I would suggest trying various calming supplements. You can try things like GABA or theanine (they both are very similar, so either one is fine). Magnesium is another good one - forms such as magnesium glycinate or magnesium taurate, etc. are the best. Avoid magnesium oxide, it doesn't absorb well, so it's just waste of money. Relora, which is an herb, can be a good one to lower your cortisol, which is probably high (and would explain waking up at night in a sweat).

If you can, consult with a naturopath or holistic doc for the supplements.

Make sure to eat a good diet - eat real whole food made from scratch if possible, not processed convenience food and junk. Stop any caffeine or anything stimulating, such as coffee, tea, chocolate, Red Bull, sugar, etc.

Keep taking those walks to help burn off adrenalin.

Hopefully all those things will add up and help you get through this stressful period - good luck!

Thanks so much for that, some really good suggestions there.
Can I ask you a couple of questions?
How long did you have GAD before CFS? Do you think it contributed?
I notice that that you had gradual CFS, what does that mean? How long did it take to develop? Did it take months years.
My problems started with sleep issues.
Sorry don't know how to PM on here
Senna

 

[caledonia]

To PM (it's called a "Conversation" on here, click on my avatar, then on Start a Conversation. I will PM you back.

 

[szenn]

Hi it's me again,
I wrote about whether I had CFS or not recently
I went to see Dr William Weir on Monday privately and he ruled out CFS absolutely. He talked to me for an hour checked my reflexes, asked if my stomach hurt when he pressed it, checked my heart rate etc.
He said as I had no post exercise malaise and no mental confusion plus excellent reflexes it could be ruled out completely. Also noted that my headaches and jaw ache were caused by jaw clenching at night as noted by my dentist (sign of stress and anxiety).
I am so confused still about what is wrong with me. I am still getting burning sensations in my hands and feet. More my feet when I take the pressure off them.

And my sleep is still broken. WHY can I fall asleep ok and be so tired at night and then wake up 3-5 hours later? Why when I Initially wake up can I fall back asleep for an hour? If I was anxious I wouldn't be able to do this. But after that second sleep of hour or so I can never fall back asleep again.
My urinary problems are unexplained too. Yes, I have frequency and low volume which could be anxiety but I also get a burning sensation (usually when I have not drunk water constantly). If my urine is darker it burns before and after I pee. This is not anxiety surely? I saw a urologist Friday and had a flexible cycoscopy. He said my bladder looked healthy but he did not check to see how much I could hold. I know IC is related to CFS. I do not have a UTI

I do feel tired sometimes. Especially if I have slept more but not awfully so and better if I have had less sleep.
What is wrong with me? This has been going on months now. The only syndrome/illness that matches my symptoms is CFS. Yet I don't have: Perrin point, sore throat, tender lymph glands, cold hands feet, low blood pressure, ridges on nails, light sensitivity, chemical sensitivity.
I have seen 9 doctors, plus Perrin osteopath and they all say not CFS. Except Enlander who I had a very brief Skype consultation with.
I am so stressed by this. I just want to sleep and be happy again.

 

[Beyond]

Thyroid could be a possibility, szenn. As I said earlier you should really check adrenals and also thyroid. These tests in the correct form should be routinary but most of allopaths doesnt even know of testing with urine (best for thyroid) or saliva (best for cortisol/adrenal fatigue). Blood tests will only show problems with these if you are in a very severe condition.

 

[szenn]

I am still not positive I dont have CFS, The bladder stiff and sleep stuff make me think I have gradual onset.

 

[Tristen]

szenn.....Based on my experience, it's a mistake to rule out me/cfs based on an absence of PEM and brain fog, specifically during early onset. I had neither for several years in the beginning. I described what I had as the "never ending flu". For several years I had what felt like a severe flu, 24/7. I eventually went from that into full blown severe bed bound me/cfs with all the neuro symptoms of OI, POTS, etc and severe cognitive issues and PEM; classic me/cfs.

While I don't hear what sounds like me/cfs from you, I would add that your very wise to investigate the possibility so as to nip it in the bud. I really don't want to add to your anxiety by saying these things, but feel that I should support your endeavors to rule out me/cfs as early on as possible, and to find a correct diagnosis. I would see it as priority to minimize stress, anxiety, and find a solution to your sleep problems, as you continue. I've read some great advice from others in this thread.