Do I have cfs

Hi everybody,

I am not sure if these symptoms are the beginning of CFS or anxiety or indeed some other illness.
I just wanted to know your gut reaction on whether or not I could have CFS.

I have provided some details of my symptom below. Sorry they are so extremely detailed but I wanted to be sure that my symptoms might be CFS. Obviously, you do not have to read it all, scan it. I rather wrote it as a therapeutic exercise.

I have seen five doctors. They all say my symptoms are anxiety related and that I definitely do not have CFS, I even saw Prof. Davis from the UK FM/CFS/ME clinic and he does not think I have CFS. I should add that doctors have only given me routine blood tests and no other checks.

Note I had a Skype consultation with Derek Enlander (cfs doctor) and he thinks I have it.

Mid January another urine infection had three sets of antibiotics but it turned out not to be a urine infection as four tests came back negative. Came to the conclusion after ‘googling’ that I had interstitial cystitis. To say I was distraught was an under statement. I felt so utterly depressed and anxious about this potential life changing condition.
My symptoms, not being able to hold much urine, peeing an incredible amount of times if I drink a couple of glasses of water. If I forget to drink, darker urine, tiny volume and slight sting in bladder before and after peeing. I still get a strong urgency to pee even if I have a low volume of urine. My bladder problems vanished in March but have come back to a lesser extent in mid May.
Mid January 2013
Noticed I had burning pain in my feet at night whilst lying and in the day. This later migrated to hands and has responded to B12 injections.
February 2013. One random night in February after feeling very stressed about interstitial cystitis I woke up at 3am and could not get back to sleep this has continued until now (June 2nd 2013). Sometimes I sleep 5 hours. Sometimes 4 hours. I fall asleep easily, in fact am usually exhausted by 10-11pm. Then I awaken after 3-5 hours, fall back asleep for an hour or two depending on whether I got 3 or 5 hours the first sleep and then I am done. I cannot get back to sleep. Usually awake at 3:30am then 4:30-5pm up for the day.
During February I noticed that my hands (palms started burning too).
Other weird symptoms mostly transient and not painful as such more bothersome
• Slight jaw ache
• Slight neck ache
• Right shoulder ache
• Tight ham strings
• Tightness in back of thighs
• Tightness in biceps and triceps
• Feeling slightly unbalanced when I walk
• Less energy
• Feeling more thirsty
• Occasional eye soreness
• Blurring vision
• Mild headaches
• Lower back pain
• Light sensitivity
• My menstrual cycle has become more frequent (had a period after three weeks then after ten days)
• White tongue (apparently not Candida according to my doctor).
• Intermittent cough. Two coughs lasting a few days.
• Intermittent mucus on chest.
• Feeling cold, feeling hot when I exercise
• Hot flushes
• Sore Nipples
• Blurred vision
• Feeling like my legs are made of jelly when I walk
• Weird sore patch under arm lasted days, but no visible sign of rash.
• Waking up sweating (not often though).
• I have bowel movements at exactly the same time each morning 5/6am. I do not pass motions again throughout the day. This has never happened before. I urgently feel the need to 'go' although not do not get diarrhea unless taking Magnesium. Sorry about the too much information here.
•
Other symptoms more bothersome
• Raging anxiety in the morning sometimes during the day, less so since eating a protein snack before bed and/or taking theanine.
• Apathy
• Depressed mood
• Sleep issues, waking multiple times. Not being able to sleep more then five hours in total
• Bladder issues, peeing a lot but sometimes not producing much volume, burning sensation.
• Burning hands and feet
• Fatigue (not major)
• Slight Brain fog)
• Waking up feeling tight muscles, especially in ham strings, thighs, and triceps.
• Feeling irritable and impatient
• Feeling restless
Tests I have had done (All normal).
• Thyroid
• Menopause
• ESR
• B12
• Diabetes (2 tests, first normal and the second showed rising sugar levels)
• Scan on ovaries, etc
• Folic acid
Treatments
• Started Trazodone yesterday (50mgs). Discontinued after two days. Zopliclone tried 4 x. No effect slept the same.
• Had B12 injections that relieved the burning pains in hands and feet. Now taking oral B12 (Mecobalmin)
• I am eating wheat free and diary free diet. No caffeine either just water and herbal tea and decaffeinated tea.
• I am taking D-Ribose, N-Acetyl Cyteine, N-Acetyl L- Carnitine,Phosphatidyl Serine, L-Tyrosine, Co enzyme Q10, cod liver oil, and a pro biotic.
• I intend to start taking GABA, Zinc and Magnesium and VIT C and A and D.

Activity Level:
Up all day without naps from 5am until 11pm. Usually walk the dog for an hour. Do all housework. Feel more apathetic about doing stuff the incapable.


Things I do not have that are consistent with CFS
• No tender lymph nodes
• No sore throat
• No cold hands and feet
• No severe headaches
• No severe fatigue
• No Severe brain fog
• Can walk for an hour or so
• Normal Blood pressure
• I am not sure about post exercise malaise. I am not wiped out for days. I am not sure what I am capable of yet.
• Can be on the computer all day, write, email, chat and I am not wiped out

If you actually read all that, then thank you so much!!

Any advice greatly appreciated

Mezz xx

Things I do not have that are consistent with CFS
• No tender lymph nodes
• No sore throat
• No cold hands and feet
• No severe headaches
• No severe fatigue
• No Severe brain fog
• Can walk for an hour or so
• Normal Blood pressure
• I am not sure about post exercise malaise. I am not wiped out for days. I am not sure what I am capable of yet.
• Can be on the computer all day, write, email, chat and I am not wiped out said...



I have had ME(CFS) for well over a decade now, and I'm afraid that as you can write the above statement, my feeling is that CFS/ME would not be the right diagnosis for you. All those with a diagnosis who i have met or talked with over that time have had post-exertional malaise, brain fog, severe (often disabling) fatigue. Most also have tender lymph nodes. The cold hands/feet, headaches and blood pressure are less necessary for diagnosis, but the others are quite conclusive.

I am sorry to agree with the majority of the doctors you have spoken with. I know how frustrating it is to know that there is something wrong and not be able to find a name for what it is. I hope that you are able to find someone who recognises your symptoms and is able to not only tell you what condition you have but also help you find a way to improve.

Thanks for your thoughtful replies. It means a lot to me
Mezz xx