ME/CFS Symptoms...New To CFS

[WXMan]

Hi everyone -- I am new to ME/CFS. So, my symptoms began the first week of April 2012, going on to 6 months ago. First off, I suffer from severe anxiety and depression and was hospitalized for a nervous breakdown in March 2012. Right after I get out of the hospital, I start experiencing fatigue that I've never even imagined was possible for a human to experience. I was literally laying down all day or slumped over in a chair with not enough energy to even sit up straight. I actually wondered after weeks of extreme fatigue if I was dying. I went to the doctor and he did some blood tests to check levels of vitamins and minerals and the only thing that came back in a negative way was Vit. D levels from the 25-hydroxy whatever it's called test. It was 4.5 ng/ml in mid-April 2012. I was told to start taking 3,000 IU Vit. D3 everyday and I actually increased it to 5,000 IU/day. I was retested in July and Vit D levels were up to 36 ng/ml. Much better. Fatigue has stuck around, however not to the levels of April. Some slight improvement in fatigue, however some days are much worse than other days. My limbs feel heavy and I have trouble working and get nausea and loss of appetite daily. Some days the nausea lasts all day long. I've have balance problems that are worse some days than other days, horrible brain fog, muscle and joint pain, and occasionally what feels like swollen lymph nodes.

I told my Psychiatrist about my symptoms and he said he thinks it may be CFS. I mentioned the CFS possibility to my PCP and he now wants me to go to a infectious disease doctor. My psych doc said he can Dx CFS. My question is, what type of doctor "usually" Dx's CFS? My geneticist also said it may be CFS as I have Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome. Is CFS the likely cause and does it typically wax and wane like this? Also, could the extreme fatigue like I had in April come back again? My fatigue varies depending on the day. Whatever it is, it isn't fun. I'm a 23 year old male too, actually 24 next month. I'm still getting days where it's hard to sit up straight because I feel fatigued and weak.

Also, want to add that I'm not working at the moment. Also, I have headaches and a lot of trouble with sleep and have not responded well to Lunesta 3 mg, Remeron, Trazodone, Rozerem to name some of the meds...

 

[Mattman1]

You and I are in the same boat-- male, 24 here as well. Mine started with extreme stress in the Winter, though not a full blown breakdown. Hope you get some good answers on the diagnosis-- I'm currently in the process as well. You're certainly in the right place!

Matt

 

[Valentijn]

The main distinctive symptom of ME/CFS is usually post-exertional malaise or post-exertional neuroimmune exhaustion. This means that a day or so after doing a normal amount of physical activity, you would feel pretty sick, like you got a bad case of the flu.

Reading your symptoms made me think "orthostatic intolerance". Those symptoms might be caused by your POTS, or you might have orthostatic hypotension to go along with it.

 

[vitamink]

hi wxman, sounds like you could (also) have lyme disease. have you done thorough testing for that?

 

[WXMan]

Thank you everyone for the feedback. I appreciate it. As for Lyme Disease, I've not been tested for that. I should ask my PCP about it when I go for my check up in October. Excellent info. I'm going to have to read on Lyme Disease because I'm not too familiar with it. BTW, I do get PEM too.

 

[SOC]

I wouldn't rely on your psych doctor to dx ME/CFS. Your PCP's suggestion that you see an infectious disease doc is probably a good one. Ideally, you should see an ME/CFS specialist for a proper diagnosis.

If you feel comfortable telling us what country you're in or what region of the US, someone might be able to suggest an ME/CFS specialist who is not too far from you. Our specialists are few and far between, though, so most of us travel quite a distance to see one.

 

[*GG*]

Welcome to the forum, hope you get the help you need/want soon!

I saw an ID Dr, he did not diagnose me with CFS, saw another one, and he diagnosed me with CFS.

GG

PS You might want to take even more Vitamin D, with blood tests, some references on the web for Vitamin D to be at 60 or 70ng/ml on the low end. FYI

 

[WXMan]

I guess I could up my Vit. D3 dose to 10,000 IU/day to see if that helps any. As for where I live, I'm in Cincinnati, Ohio USA. I currently have an appt for the first week of December at Infectious Disease Consultants of Cincinnati with Dr. Hamilton. http://www.idccmed.com/

Don't know if anyone has heard anything good about that place or not or of any other doctors in my area. Once again, thank you all for the responses!

 

[SOC]

I guess I could up my Vit. D3 dose to 10,000 IU/day to see if that helps any. As for where I live, I'm in Cincinnati, Ohio USA. I currently have an appt for the first week of December at Infectious Disease Consultants of Cincinnati with Dr. Hamilton. http://www.idccmed.com/

Don't know if anyone has heard anything good about that place or not or of any other doctors in my area. Once again, thank you all for the responses!

You are relatively near Dr Lerner, who is in the Detroit area. He is an ME/CFS specialist and whose background is infectious disease. While you may or may not want to work with him as an ME/CFS specialist, he is excellent at finding infectious diseases in ME/CFS. He might be a good place to start.
http://www.treatmentcenterforcfs.com/

 

[taniaaust1]

I personally think it sounds very likely you have ME/CFS. .. and that your symptoms arent just being caused by POTS (thou it can cause many of them). Its all your symptoms along with the feeling like your lymph nodes are swelling that makes me think that you dont JUST have OI/POTS (POTS dont cause that).

As your genetist said (he sounds like he was a very knowledgable guy) Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome are common coexisting illnesses which go with ME/CFS.

Any doctor may diagnose ME/CFS as long as you fit the criteria check list and your symptoms arent being caused by another illness. There are no doctors trained in ME/CFS as such so one who specialises in it can be from any field at all. As someone else said.. find yourself a ME/CFS specialist .. I'd say make sure that they are used to dealing with ME patients (that would be one used to seeing actual abnormalities in their ME/CFS patient group and who wont be holding psych views on this illness).

One hall mark of ME is it waxes and wanes.. more one does the often worst it is.

As far as sleep goes and treating it.. it helps to work out exactly what coexisting sleep issues you have with the whole problem as different sleep issues are treated differently eg melatonin is used for circadian issues with the sleep.

 

[taniaaust1]

You are relatively near Dr Lerner, who is in the Detroit area. He is an ME/CFS specialist and whose background is infectious disease. While you may or may not want to work with him as an ME/CFS specialist, he is excellent at finding infectious diseases in ME/CFS. He might be a good place to start.
http://www.treatmentcenterforcfs.com/

Once you get your diagnoses (or even before that). as SOC suggested Dr Lerner may be a good one for you to see. Once you have a diagnoses.. you will need a specialist for more treatment options, to fill out important paperwork which may be needed to be done (there is a good chance you may not be able to go back to work so will need a ME/CFS specialist to be strongly supporting you) etc etc

 

[caledonia]

Hi, I'm also in Cincinnati. The propranolol can cause fatigue and also insomnia. The med will deplete melatonin. So you'll need to take some melatonin at bedtime to counteract it. Hopefully then you can get off of some of those sleep meds.

You can PM me if you want to talk some more. I know a few other people from Cincinnati on here. One has been to Lerner.

 

[WXMan]

Thanks for the doctor suggestion. I will have to check Dr. Lerner out if the doctor by me isn't good. I'll give Dr. Hamilton a chance first. caledonia, I have been taking between 3-6 mg of Melatonin and B-Complex. My typical night is 4-6 hours of sleep. Maybe I should up the Melatonin to 9-10 mg a night. I had one sleep study done and snoring was present, but no sleep apnea. My psych doctor wants me to go to a second sleep doctor to get another opinion and possibly a second sleep study done if the next doctor wants another done. The nights that I get 6 hours even, I still am waking up unrefreshed. I used to get up and have energy and feel like I could take on the day, but now I just drag myself out of bed. I do have to say that Tramadol does provide a boost once I take my morning dose. It seems to be a stimulating med. Has anyone found stuff like Wellbutrin, Effexor, Tramadol, etc to help give an energy boost? Tramadol has SNRI properties according to my doctor. I'm taking Tramadol off-label for Treatment-Resistant Depression after failing to respond to all the SSRIs, Cymbalta, Effexor, Trazodone, Remeron (although still use Remeron for sleep), and a couple of the tri-cyclics, all over the past 7 years. Didn't try MAOIs. I'm really sensitive to medicines, however have responded quite well to Tramadol.

 

[caledonia]

Have you tried extended release melatonin?

 

[WXMan]

Yep. I've also tried Valerian Root. Valerian seems to work some. It does have a sedating effect to it.

Here's the melatonin I take: http://www.drugstore.com/natrol-melatonin-timed-release-3mg-tablets/qxp30997

I started with one tablet, but have been taking 2 tablets hoping to get extra benefit. I've tried immediate release as well. I'm so desperate at this point!

The Rozerem, Lunesta, and Remeron combo does seem to help some. Without those meds, I get about 2-3 hours a night. So I can get a few more hours in with those.

 

[caledonia]

Here is some other stuff to try for sleep: theanine, Kavinace, Seditol (herbs not a med), magnesium. Considering your reaction to SSRI's, I would be careful with anything that acts on serotonin, like 5htp or tryptophan.

Other: fish oil for depression, headaches and pain, theanine and magnesium for anxiety, CoQ10 for brain fog, ginger tea for nausea.

Have you noticed any problems tolerating chemicals, such as paints, markers, cleaning products, car exhaust?

Also you have several gut issues going on - acid reflux, IBS and nausea. It actually may be best to start here, otherwise whatever you take won't be digested and may not be effective. Maybe that's the problem with the melatonin?

A general gut program would be a gluten free, dairy free diet, probiotics, digestive enzymes and betaine hydrochloride if you have low stomach acid. The reflux can actually be caused by low stomach acid, not high. They both have the same symptoms. Google "baking soda burp test" for info on a home test you can take to determine which you have.

 

[Timaca]

Check this out: http://chronicfatigue.stanford.edu/patient_care/

Best, Timaca

 

[WXMan]

Thanks caledonia and Timaca. Excellent info caledonia. I went to my POTS doctor today and he switched my beta-blocker to Metoprolol Succinate from Propranolol ER. I am hoping I'll be able to sleep better on the Metoprolol. Also, hope the Metoprolol works better for my POTS symptoms than the Propranolol because the Propranolol hasn't been helping enough. The Cardio doctor today also recommended the CoQ10 you mentioned so I ordered some online. I will try the ginger tea as well for nausea that you mentioned. I also picked up some fish oil.

I have not noticed problems tolerating chemicals from cleaning products, markers, car exhaust, etc...just certain medications.

The information you all provided has been invaluable so far and I appreciate it!!

Oh yeah, I have to go for a TTT next month. I am dreading that!

 

[nanonug]

I have Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome

With these two conditions, I think it would make sense to look into mast cell issues. More info here: ME/CFS is a mast cell disorder (hypothesis).

Good luck!

 

[WXMan]

Hmm never heard of mast cell problems. Thanks nanonug!