is it CFS?
Posted , 5 users are following.
Dear community
Can anyone help me?
I’ve been living with fatigue now for almost 2 years which started approximately 2 months before I was diagnosed with Cancer, at the time. I went on to have the tumour removed and received further treatment through chemotherapy which all ended about 14-15 months ago. Since then I’ve continued to live with a mild form of tiredness and fatigue which didn’t affect my life too much as well as short term memory issues, since the chemo.
Until recently I wasn’t too concerned, believing that it was all part of getting better, however about 5 weeks ago things took a sudden turn for the worst and completely out of nowhere. Every day has become a struggle since. I’m concerned that I may have a form of Chronic Fatigue.
At the moment I am having tests done, the recent blood tests haven’t given any indicators to what this could be. I believe that they checked the lot, including signs of anaemia, thyroid, diabetes, hormone levels and for cancer markers, as well as cell count and organ function etc.
To describe a new average day would go something like this:
I get up having had 7-8 hours sleep, feeling tiered and exhausted. By around 8:30 I am sat at my desk at work nursing a cup of coffee and trying to go through my emails. By around mid morning my muscles (arms and legs) start to feel heavy and tingle by lunch time they are aching badly and movement becomes slow and stiff. On days that I try to push on, the muscles start to burn. I go home and lay down for a period of 2-3 hours, often I will sleep. I wake up still feeling tiered but my muscles are better and I can do light activities in the evening.
Any form of activities such as house work or walking to the shop has become exhausting and need to rest afterwards. I try to plan my days and any activities to be completed in the morning, which appears to be where I am at my best due to muscle pains. Walking a few miles is all I can manage; if I push beyond that I start to feel wobbly and unbalanced. I do get headaches and I am sometimes sensitive to light. Most daily activities and tasks leave’s me short of breath.
I’m no longer convinced that the fatigue experienced is part of the natural recovery process. I don’t understand why the existing symptoms have suddenly become much worst. Other issues I have is abdominal pains, mostly around the appendix area which if I am honest started several months ago, which was checked out back then and no cause was established. Until recently the pain although came on sharp became a dull ache and I put it down to pulled muscles. The pain is back and has been for several weeks.
Other issues is concentration, even with activities and tasks that I enjoy. Reading is becoming problematic as I cannot recall what I’ve just read.
Does anyone have a similar story to me?
could this be CFS?
Thank you for reading
Andy
3 likes, 83 replies
andrew_08416
Posted
Today I recieved an update from the recent round of tests. Finally these tests have picked up on something. Two possible causes for my chronic fatigue actually. Wow.
My GP has discovered that I have a low Vitamine D score of 32. and advises although dispite having a healthy diet and taking regular daily suppliments my Vit D has dropped dramatically and says that the healthy diet and daily suppliments have prevented the levels from dropping further. Today I am starting a 2 month course of high strengh Vitamine D tablets (20,000IU) each tablet twice a week.
The 2nd issue found is a inflammation and possible Autoimmune disorder. Sadly no magical pill is being offered right now, I have to wait to see a specalist.
It looks like there could be light at the end of the tunnel. Thank you all for your kind words and assistance thus far
regards
Andy
Beverley_01 andrew_08416
Posted
Glad to hear yr gp is being pro active with this. My friend with cfs/me also ended up with a vit d and also a vit b12 deficiency. Her levels are back to normal but, the cfs/me is still here, how ever,I know 2 people whose fatigue was vit d deficient who are better after the course. Do you know what specialist you will be seeing? Cfs/me is classed as auto immune disorder
Beverley_01 andrew_08416
Posted
You sound a bit relieved in your post? Hope you had a good Christmas period,
Best wishes
B
andrew_08416 Beverley_01
Posted
Yes a little relieved still very tired and exhausted.
My gp said I've an inflammation and think he's sending me to a rheumatoid specialist to begin with on account of the burning and muscle weaknesses plus the joint pain.
I asked him about my short term memory and never got a straight answer.
Guess it's one step at a time
x
Beverley_01 andrew_08416
Posted
I'm glad your doctor Is working with you with this. There seems alot of people on here whose doctors aren't very helpful at all. Let us know how you get on with the specialist.
B
andrew_08416
Posted
Yesterday afternoon I had my regular Oncology followup, and have been trying to let the news sink in. I'm not sure if this will help anyone, but I think its worth mentioning.
Previously posted after my GP appointment last week, I was diagnosed with an insuficent Vitamin D level and he mentioned there are signs of an inflammation from the test reports that I am to be refered to a specalist. I was given high strength vitamin D3 20,000IU tablets to take twice a week which I have been doing so since. I dont feel any different.
Yesterday afternoon I had my Oncologist review. Following their tests, they comment that they wouldnt have called low level Vitamin D as my calcium levels are at optimal levels, but Vitamin D doesnt do any harm so I am to continue with them. They asked if I was given any anti-inflamateries or Steriods by my GP and I said no, but they didnt chase the matter
The inflamation which my GP was reffering too is actually the Cancer Marker LDH. normal levels in the body should be between 105-340iu/l mine is a score of 580iu/l
In addition to this my GP made a slight error, as my testosterone isnt stabalising he didnt look at the right test result dates. My current acutal score is 10.2. just above the normal range but still on the low side.
On a possitive note. None of the other cancer markers were elevated in the slightest, I've a CT scan in the next few weeks (waiting for the appointment) and then a follow up with the oncologist one week after to rule out any cancer return.
Im feeling confident that it's not cancer. The level of fatigue associated with cancer is different to what I am feeling although it was shorter lived. My Oncologist appeared to have agreed with me but will check to be on the safe side.
The interesting part is the LDH levels.
Reading up on LDH its said that its: an enzyme that helps the process of turning sugar into energy for your cells to use. LDH is present in many kinds of organs and tissues throughout the body, including the liver, heart, pancreas, kidneys, skeletal muscles, brain, and blood cells.
My suspcion has always been that following Cancer treatment that I've not been right, since the flare up I suspected my immune system isnt what it should be and its now looking as though I was right.
Having high levels of LDH isnt a confirmed diagnose of cancer, it's also a likely cause of tissue/muscular damage or an organ failure. Thankfully my organs where also tested in the blood tests and they are all fine, I also had an ECG about a week ago with no concern there either.
For me at least there is a medical reason behind my symptoms, with a lower then normal
Vitamine D score of 32,
Testosterone score of 10.2,
and an elevated LDH level of 580iu/l
I can at least confirm the symptoms as being real. Furthermore there doesnt appear to be a great deal of research in LDH with regards to CFS/ME and Fibromyalgia that can be found online other then more of reports that LDH can often be high with this.
Im going to have to start writting my emails again to the specalists who provided a great deal of information in the first place and see what they have to say.
Out of interst I would love to know if anyone else have discovered high levels of LDH during their diagnosis.
lots of information here - hope you find it useful.
all the best
Andy
andrew_08416
Posted
Update and some important discoveries.
I blogged last week that my GP had found two possible causes in the form of insuficent levels of Vitamin D and evidance of an inflammation.
Yesterday afternoon I had my follow up with my oncologist who says....
Although my Vitamin D can be considered low, my calcium is optimal and wouldnt have said it could be a cause. As taking Vitamin D doesnt cause any harm, I am to continue with the treatment to at least raise the levels but the Oncologist doesnt believe it to be the cause.
Further more, the oncologist confirmed that my Testosterone levels are falling - however they are still in the normal range and other then the previously reported symptoms I do not show any emitonal changes, hair loss/thinning or any male personal issues/dysfunctions. They will however be refering me to another specalist for possible HRT as my level is 10.2 and only just in the normal range.
My GP mentioned the inflamation. this was also confirmed with a high LDH level, (one of the cancer markers that I am usually checked for) the good news is that none of the other markers are raised so Cancer isnt being suspected but equally its not being rulled out I'm to have a CT scan in the next few weeks so they can make sure. I do not suspect cancer either, as previously stated the cancer related fatigue (CRF) is different in many ways to what is being experiened today.
LDH is a very interesting thing and although I would love to post a weblink, I know that we cannot so here is a caption from a medical website on LDH.
NHS website:
..." A lactate dehydrogenase (LDH) test measures the amount of LDH in the blood.
Lactate dehydrogenase is an enzyme that the body uses during the process of turning sugar into energy for your cells to use.
LDH is found in many of the body's tissues and organs, including the muscles, liver, heart, pancreas, kidneys, brain and blood cells. ...."
Its linked to a few issues, including Cancer, Organ failure, heart attackes, strokes, tissue damage, muscle damage/decay, alchole abuse, blood flow, cell counts etc etc. Its said that a normal level of LDH is between 105-340iu/l I scored over 580iu/l in my recent test.
Thankfully I've also had other recent tests prooving my organs are fine, an ECG as well. In addition my colesterol, and blood counts have also come back normal, vitamin D only showed up as a last resort test as did the enzyme inflammation test that my GP carried out. The LDH was done by my oncologist.
I've been trying to find out if there has been a study on LDH levels in CFS/ME paitents. Other then some reports of elevated levels its not conclusive as there are still the 101 conditions which follow a similar family of symptoms.
For me at least the medical profession can now say something is wrong. The mystery is starting to unraffle, what the cause or multiple cause could be still at present remains uncertain.
At the moment I've a low Testosterone score (10.2 but still considered within the normal range) An insulficnet vitamin D level (score of 32, but optimum calcium and may not be the cause) a high LDH score of >580iu/l (top contender, although the reason behind that is yet to be discovered)
here's a lot of information, I hope that others will find it usueful. Please let me know if anyone has had a LDH test and its also shown as being high
All the best
Andy
andrew_08416
Posted
Think i've a new symptom, which I need your input on.
Last night I developed a rash on my face, the onset felt like burning and razor cuts to the touch. it itched like made so took myself off to the pharmacist to gave me a generic cooling cream which helps.
The rash follows the sinus perfectly. Covers both cheecks, bridge of nose and forehead. Its light in complexion, mild pink in colour (salmon pink if I need to describe it, but on the red hue side) with hundreds of small non blistering raised bumbs, but itchy.
The environment hasnt changed (IE no new aftershave, detergent or foods eaten that I am usually fine with)
my plan is to wait a few days and see if it goes away. But do you think its worth mentioning to my GP ?
regards
Andy
andrew_08416
Posted
I think I better tell my GP regardless
Beverley_01 andrew_08416
Posted
My friend also with cfs gets the red rash exactly where you describe but no itching. Last summer I had what you describe around my neck and I really couldn't pinpoint it. Thought it may be something like a scarf had got something on it? Itched like crazy!
Yep, def see doc if still an issue.
B
andrew_08416 Beverley_01
Posted
Im wondering if it's lupus ?
Symptoms are the same as cfs.
Guess I still have to wait for that referal. I asked that the rash gets added to my notes in case I forget
Beverley_01 andrew_08416
Posted
Does lupus have same pain? I don't know. I feel cfs/me makes usual stuff have more severe symptoms? Just had something like cystitis that was more painful than labour. I was starting to worry. Even antibiotics didn't seem to be kicking in. Don't think anyone gets the madness of some of the symptoms unless they have this or something similar! Let us know what doctor concludes.
How's other symptoms Doing?
B
andrew_08416 Beverley_01
Posted
At the moment I still remain undiagnosed, reading up on Lupus it sounds very similar but with a few key differences. The Butterfly rash which appeared last week is apprently a tell tell sign. however my rash flared up on a monday and started to go away, thanks to the chemist and by the weekend its barely noticeable. I thought it could have been to the high dose Vitamin D but hasnt happened again since.
I've just had a Lupus DNA test and a specific proten test. This does differ from CFS as Lupus can be medically proven. Sadly there isnt a cure.
I've all the symptoms, the only one I am unsure of is Raynaud syndrom. Being fair skinned and often pasty I cannot tell if my fingers are whiter then usual. I looked at a test on line and they did go white but then so did the rest of my hand. being that I am not trained I cannot tell the difference.
However the DNA and proten test should come back either positive or negative.
I did however receive my refereal to a rhematologist and currently waiting for that appointment.
I've a CT scan coming up in a few weeks now.
But still its the waiting game not knowing.....
Beverley_01 andrew_08416
Posted
No worries, glad the doctor is investigating things with you. When do you get yr results? I guess that once you 've a definite cause for your symptoms you can at least know how best to manage them? How are your other symptoms? The pains In your limbs etc. Hope that has settled some.
I'm still recovering from an infection and trip to the seaside two weeks ago. So frustrating! At least the sun Is shining : )
B
Beverley_01 andrew_08416
Posted
B
andrew_08416 Beverley_01
Posted
My GP said that he found an inflamation and that I was going to be refered, a week later I had my scheduled follow up with my Oncologists who confirmed the inflamation to be LDH. One of the 3 cancer markers they've been keeping an eye on. They doubt that it is cancer again but are going to check to be in the safe side. the fatigue isnt like what it was on the last onset of cancer so I'd be surprised.
As for the limbs. Yes they've settled down a little, im not bitting the pillow in pain anymore. but they still hurt and its more exhausting trying to block the pain and make myself be active.
The burning feeling seems to have settled into the Knee area, sometimes the feet as well. Arm pains have greatly reduced and now I've got back pain, from base to neck and both sides of my ribs. Think its a posture thing tying to reduce pressure on other areas.
short term momory is still terrible but things are slowly becoming less of a fog to recall. Started back on the art a week or so again so at least I've an outlet, and a way to try and forget whats occuring.
walking is problematic, my legs are so weak, its more noticeable walking up and down the stairs where I wobble a lot. long walks still make me limp and slow to a crawel but its important to keep it up.
Cant say I am noticing a difference with the Vitamin D suppliements but then again it may be the reason why there is less pain in my legs.
after the storm yesterday the sun is shinning here too.
Hope you feel better soon and hopefully you have some lovely memories of the seaside. I miss the sea
xXx
Beverley_01 andrew_08416
Posted
Am glad some of the symptoms have reduced. It is exhausting trying to ride through the pain and biting the pillow really resonates with me : 0 I don't think people truly believe how bad it gets. I've cut right back on my activity and feel that has helped alot with the pain for me. Unfortunately, travelling really affects me still, knocks me for six! Walking was my passion and miss it alot. Like you I struggle now and get this kind of locking of one knee. Stops me getting too far but its intermittent? A couple of weeks ago It was so bad I had to grab my friend and struggled to get down some steps. 10/10 in agony. Got on the bus, it was stiff and about 3/10 pain. Got off the bus 45 mins later-no pain! I took no painkillers so can't rationalize what happened. Doctors said could be spurs, doesn't explain the on/off nature though.
When will you get the lupus results? My friend with cfs/me just had a course of vit D too. Their levels are back up now but still exhausted alot of time.
I love the sea, find it calming. Would be great to spend a decent amount of time there. Where would you go If you could go anywhere?
B
andrew_08416 Beverley_01
Posted
Im not acturally sure who delivers the results. will it be the rhematologist, or will it be my GP? thankfully I've been assigned a rhematologist within walking distance but dont have my meeting date as yet. When doing the blood test on Monday the nurse said that one test will take 3 days the other will take a week. Guess its a wait n see.
This condition is driving me nuts!
The rash is coming back this morning, taking selfies about every hour so I've something to show the doctors. The last one came and went quickly so with luck this one will too.
in answer to your question where would I go?
I'd have to say the South Coast. Its where my family live and I grew up. At this time of the year its a dive but at least I'd be home
xXx