Can I have some sympathy??

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jaynesar
Regular Member


Date Joined Mar 2007
Total Posts : 24
   Posted 3/13/2007 2:46 AM (GMT -7)   
Hi i'm new...  Sorry about the subject!  I guess its a pretty sore one for most people that suffer from CFS.
 
I'm still not diagnosed as having anything which makes me mad I guess and sometimes I feel like I should be put down, if I was an animal I think they would have by now.
 
I've suffered all my life with illnesses from the moment I was born.  Had maybe 50 or 60 course if antibiotics in my lifetime and had my tonsils out 7 years ago after three years of constant tonsillitis which ended up in lots of steroids etc. 
 
I'm in my early 30's I eat healthily and exercise although for the past 3.5weeks I have been unable to do any.
 
I've suffered from IBS symptoms since I was 14 and often don't know what the day brings stomach wise. 
 
about 18 months ago I had an episode which to be honest is still ongoing now.  I would go to bed and try to sleep but would spend most of the night, every night for at least 9 months with back and arm pain.  My arms would go tingly and my neck and back would hurt.  Sometimes my hips or my ankles would hurt.  I'm not sure whether it was connected but I would spend hours with itchy skin, just like I had something crawling underneath it.  This continued for a long time, the doctor tried to prescribe me anti depressants but I have refused, I don't want to take them as I did several years ago and they had adverse affects.  Anyway to cut a long story short the aches and pains finally subsided and having nearly become addicted to sleeping tablets I managed to wean myself off and I get average sleep now.
 
During this time i've had bouts of nausea and vomiting, i've had swollen glands and had flu over New Year 07.  Since the new year i've suffered with fatigue, I feel exhausted most of the time, sometimes when walking I don't feel like I can move one leg in front of the other.  I've got a constant mild sore throat and feel foggy!  I have stomach problems and I feel depressed.  My eyes get so tired that they feel hot and dry.  If I sleep I never feel refreshed.
 
I had a Hair strand test result which gave me "post retrovirus overload" what on earth that means I don't know!!!
 
This is the worst and longest period i've felt this way and I need some form of closure!  I'm having blood tests, urine tests and scans on my stomach and womb a whole host of tests.
 
There is alot of cancer in my family and sometimes i feel like i'm a hypochondriac, but these symptoms are very real to me and after reading up on CFS I do wonder if i'm suffering from something similar....
 
How long did it take people on here to get diagnosed??

jaynesar
Regular Member


Date Joined Mar 2007
Total Posts : 24
   Posted 3/13/2007 3:02 AM (GMT -7)   
Mmmn - I forgot to list my symptoms but I think from the above you might get my gist!
 
To add to that list I do suffer from body temperature fluctuations, sometimes night sweats, strange headaches, dizziness, sensitivity to light
 
confused  

abc123
Regular Member


Date Joined Feb 2007
Total Posts : 172
   Posted 3/13/2007 3:49 PM (GMT -7)   
Ever had an MRI of you cervical spine? It would help explain the neck and back pain and the tingling in your arms. Any numbness?

I have chronic pain that doesn't lend itself to sleeping well, and I believe that it results in a lot of the same symptoms you have. Not sleeping can do odd things to the body. My pain doc is having me take a sleeping pill (Ambien CR) every night to help me got 'restorative' sleep. I've been doing that for almost two weeks and must admit I'm feeling better that i have in a long time. Not great, but any little bit is a blessing.

Regards, Stephanie.
Dx: FMS/CMP/DDD - 2 ACFs with more to follow, scoliosis, unlevel hips
Rx: Cymbalta, Soma, Zanaflex, EC Naprosyn, Ambien CR, Lortab and Percocet.


jaynesar
Regular Member


Date Joined Mar 2007
Total Posts : 24
   Posted 3/14/2007 2:00 AM (GMT -7)   
Hiya

I don't get any numbness and the pain comes in waves on and off. Sometimes its up to six months before I experience any real pain and the rest of the time its tingling and well I guess almost numbness a bit like when you sleep in the same position for a long time and get the dead arm effect!

I have had xrays on my spine before physio just plain hurt! All my muscles in my body are very tender so whenever my partner offers me a massage I tend to refuse as no matter how gentle he is, its almost always painful.

arwin_undomiel
New Member


Date Joined Feb 2007
Total Posts : 15
   Posted 3/16/2007 8:36 AM (GMT -7)   
Have you been tested for Epstein Barr Virus or mononucleosis?  I had many of the same symptoms.  Instead of being numb my body would shake from the virus (antivirals) attacking my nervous system.  I either did nothing but sleep or couldn't sleep.  The post retroviral overload is another reason I ask and it can take a year or two for it to return to a normal level.  Sorry I can't be more help.
 
Angie
 

arwin_undomiel
New Member


Date Joined Feb 2007
Total Posts : 15
   Posted 3/16/2007 9:19 AM (GMT -7)   
Sorry, forgot to ask if they have checked your B12 level? I knew I had seen something in my notes about B12 that sounded similar to what you described.

S&S of Cobalamin (B12) Deficiancy include:
General symptoms of anemia (rapid heart rate & breathing, restlessness, confusion, dizzyness...or none)
sore or swollen tongue
anorexia (not intentional!!! you end up not eating because you don't feel well or your stomach is upset...)
nausea
vomiting
abdominal pain
weakness
numbness in extremities
impaired thought process
decreased sensation to heat and pain (on skin).
Because it is a form of anemia you will have muscle pain as well because the muscles (well your body) aren't receiving enough oxygen. This is also going to cause you to be tired due to lack of oxygen.

This would be something that would have began when you were young and could decrease your ability to fight illness (autoimmune disorders) due to malabsorption. Causes can be hereditary or due to medications and would be exacerbated by an increased use of antacids which, forgive me if I am wrong, you probably used to help with the upset stomach and IBS symptoms you had. The B12 can't be replaced by a pill because the body can't absorb it (hence why it is low to begin with). Treatment is just a monthly shot of B12.

Or it could be none of the above. Symptoms fit but our bodies are wierd little things. Sometimes I think they act strange just to annoy us and intrigue physicians...or make them more money...

Angie

jaynesar
Regular Member


Date Joined Mar 2007
Total Posts : 24
   Posted 3/16/2007 2:30 PM (GMT -7)   
I'm being tested for B12 as we speak, but that really is spooky!

I do get rapid heart rate on and off and restlessness, confusion, dizziness, foggy in the head!!
I have lost weight recently half a stone i'm down to 9 stone now which might not seem too bad but because I exercise I weigh quite a bit more than normal and I have a large frame. My friends / family have all said recently that if I lose much more i'm really going to start looking gaunt and ill. Thing is if I don't eat my stomach doesn't hurt so much and at the moment, that really is the worst symptom i've got apart from the tiredness.

The last day or two i've been pretty ok tiredness wise, not quite my usual self but much better than last weekend. Thing is, in order to stay like this I literally have to do next to nothing! This really isn't like me and i'm so desperate just to do a bit of exercise, but i'm worried i'll burn out again.

I do get weakness and I get numbness in my extremities along with tingling on and off.

I know i'm depressed aswell but I don't want to take anything for it. Not unless I get really bad.

I've had a really bad couple of nights with my stomach, so today i've eaten very small meals and whilst its still a bit achy i'm hoping that I will manage to get a good nights sleep.

Do you know if B12 would cause the occasional night sweat??

jaynesar
Regular Member


Date Joined Mar 2007
Total Posts : 24
   Posted 3/16/2007 2:32 PM (GMT -7)   
Another thing I also suffer from is really strong heartbeats, like palpitations I guess. When I lay on my left side at night its only for a minute or two because the sound of my heartbeat pounding is annoying. I can see my heartbeat very clearly when I look at the bottom of my neck and when i'm lying in bed my stomach is constantly moving up and down very clearly to my heart beat. Is this normal?

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 3/16/2007 5:18 PM (GMT -7)   
jaynesar, I'm so sorry about everything you are going through and that you still don't have a diagnosis. I know how frustrating it is. I have been there several times. Of course I'm no doctor, but if they've ruled everything else out, it sounds very possible that you have CFS. I don't know much about the retroviral thing, but it would be interesting to know more about that and how that could play a part in everything.

I've also had heart palpatations and don't know what causes this. Has a doctor checked that out? If they haven't, you should get it checked to make sure your heart is okay.

Try to hang in there. I know it is a lot to deal with. Just know we are here for you.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

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jaynesar
Regular Member


Date Joined Mar 2007
Total Posts : 24
   Posted 3/17/2007 7:37 AM (GMT -7)   
Thanks for your reply... I've had my heart checked out and its perfectly healthy (should be with all the exercise I do sorry used to do... mad )

I really do hope that the tests they have done show something.. Well I know I have post retrovirus overload but have no earthly clue what that really means in terms of illness / symptoms and long term outlook. Although I do know that retrovirus can lead to cancers which is rife in my family. So I guess i'm just a little scared of that aswell.

Again last night I didn't eat much and whilst my tummy did play up I felt much better. Although I did have a wave of tiredness that hit me within minutes of feeling fine and decided that I had to go to lay down! My partner woke me up when he came to bed, well I say woke me up he said I mumbled a couple of words then I was asleep again!

I've had a lazy day today as i'm planning on going out tonight to try and enjoy myself with my partner and friends. This will be the third attempt recently. The previous two i've been sick and vomiting and lethargic. I've taken extra strength ginseng today! I've been taking it for 5 days now, not sure if that is whats reducing my tiredness.

jaynesar
Regular Member


Date Joined Mar 2007
Total Posts : 24
   Posted 3/17/2007 7:38 AM (GMT -7)   
I was also meant to post that i've been suffering from alot more muscle cramps in my legs recently. Usually calf, but this morning I had the most horrendous muscle cramp in my thigh... I really did think my leg was going to explode. Its a little tender now!

Do you know if muscle cramps are related to any vitamin or mineral deficiency?

jaynesar
Regular Member


Date Joined Mar 2007
Total Posts : 24
   Posted 3/18/2007 10:06 AM (GMT -7)   
More thoughts...

I'm undergoing major orthodontic work on my teeth. The past 14 months i've had four teeth out and a brace as I had severely crowded teeth. The pain i've had has been extreme at times and the movement substantial. I've got another 6 months of work to go.

I'm wondering whether the past 1.5 years of my treatment has had an effect on my health, it does seem quite apparent that this is the worst bout of tiredness / fatigue and problems i've had for a few years.

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 3/18/2007 1:52 PM (GMT -7)   
This is just a thought and I don't know if anyone has checked it out yet or not. When I first got sick, my doctor asked if I had had any dental work or proceedures done. I don't really know how to explain it, but I guess sometimes, somehow in certain people it can affect their heart and cause symptoms of fatigue and pain, etc. I had an ultrasound of my heart to make sure that didn't happen to me and everything turned out okay. I know I didn't explain this very well, because I don't really remember how it was explained to me, but it's worth asking your doctor about.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



jaynesar
Regular Member


Date Joined Mar 2007
Total Posts : 24
   Posted 3/20/2007 10:40 AM (GMT -7)   
I had a scan on my stomach and abdomen today. Nothing really to report, he did hover over my spleen for a while taking a few measurements here and there. He tried to get a good image of my uterus and ovaries but ended up having to do an internal scan and even then it was very difficult to locate! I did warn the doctor that this would be the case as I know I have a tipped uterus and its really tipped back. He mentioned that I had free fluid in my pelvis and advised that it might be linked with ovarian cysts or endo but he would report the findings back to my normal doctor within the next day or two. He said the fluid may cause pain and inflammation.

I called the doctors surgery today to see if my blood results were in as they were due in today, but they haven't received them. My doctor is away until the 2 April but his assistant advised me that the results would be reviewed by another doctor as soon as they arrived.

Today i've felt quite well, more energy than i've had for weeks, still the odd tired spell but nothing like I have been. Yesterday my stomach was awful in the morning but I guess that might of had something to do with the pizza I had the night before!!!
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