ME/CFS sufferers, please help answer my questions...

Brain and nerves
1

Hi everyone,

I am very new to all this, so please excuse me if stuff like this has already been covered. I have been doing some research into the symptoms that I have and a lot of them point to ME/CFS, but I really can't be sure.

i went to the Dr with terrible pain in my left wrist that comes every couple of months and normally lasts 1-2 weeks. While I was there I listed all my other symptoms to see if she thought they were related to my wrist. My symptoms include:

- severe tiredness, if I allowed myself I could sleep all day. I work in an office 3 days a week and find myself falling asleep at my desk by about 2pm. This tiredness varies in severity and I can have a few weeks where I am less tired

- severe wrist pain every few months. Shooting pain from my wrist into my fingers and up to my elbow and shoulder. Can't use this hand, can't pick anything up, twist a door handle or bottle top etc. usually last 1-2 weeks

- short term memory loss. Can't remember what I did yesterday, forget what I'm saying in the middle of talking, easily distracted

- lack of concentration. When reading I have to have complete silence. Often I end up reading the same line over and over and most of the time I read a paragraph and forget what I've read I.e, I've not taken the information in and I have to start again

- restless legs and muscle twitches. When I'm on the sofa or in bed I have this urge to move my legs around, and my muscles (mostly legs but sometimes arms, stomach etc) randomly twitch causing me to kick out etc.

- when I stand up my head pounds in time with my heartbeat for around 20 seconds

- when I scratch my legs to relieve an itch (usually my calves but sometimes my thighs) the muscles become really sore and feel really bruised for around 30 seconds to 1 minute afterwards

- very occasionally my eyes kind of get crossed and stuck in this wierd blur (very hard to explain) takes a while to go

- my ears sometimes go semi deaf with a bit of ringing for a few minutes

- often get tingling fingers and toes, have to shake them out as if the blood flow isn't there

- my legs ache when walking up the stairs to the point where I have to stop for a minute when I reach the top (but this could be lack of fitness)

- body temperature is very up and down. I am always cold when others say it is fine. But then sweat profusely when exerting myself

I have been tested for all the prime suspects - thyroid, lupus, anaemia, rheumatoid arthritis, b12, kidney function, trapped nerves, carpel tunnel etc and all have come back clear.

The only reason I'm not sure about ME/CFS is because I don't have severe muscle pain, which seems to be a huge complaint for ME sufferers. I get the pain when I itch my legs and I get tired legs when I go upstairs and also the chronic wrist pain every couple of months, but nothing that lasts a really long time and I can't say that I am constantly in pain.

can anybody help me? I don't know if I'm being a hypocondriac or if I'm barking up the wrong tree. I also don't know how to get a diagnosis as the Dr seems to be ignoring the possibility of ME/CFS.

Thank you in advance.

 

2

Hi Nacho, Reading through your list of symptoms, it sounds very much like you hve CFS/ME. The wrist pain may be something else (carpal tunnel syndrome or RSI) but all the rest of your symptoms are identical to mine- and I am diagnosed CFS/ME. I dont have any pain. It might be worth joining a local CFS/M.E facebook groups and ask around on there for a local GP who understands or at least believes in CFS/M.E. xx

3

Thanks flowerpotlady, I did feel the symptoms matched but was just unsure about the lack of muscle pain. Do you get the pain in muscles when you scratch them? I have joined a few groups of Facebook, so I will take your advice and ask around for a local ME/CFS doctor xx

4

I have all your symptoms apart from the wrist problem. It sounds very like M.E. It took my doctor 8 years before he regonised the problem (I think he thought I was a hypocondriac) He had been to a lecture by an M.E. specialist and asked if I would like to go and see her and was surprised when I said yes. I was diagnosed in 1992. Best of luck

Alison

5

Hi Alison, thanks for your message. Do you have the muscle pain?

6

Also sounds like CFS to me.. even the wrist pain.. i get it in my wrists and ever the joints in my toes when it really bad. The restless legs and arms is a classis CFS and is proably one of th issues that causes bad sleep problems  Ive managed to finally find a herbal rememedy to help with that smile  I would deffo ask for some type of referal.

 

7

Yes I do have muscle pain, but not all the time, just when my M.E. is really bad after doing too much.

Alison

8

Thank you to everyone who has replied so far, it's nice to know I'm not being a hypocondriac! What do you guys who have been diagnosed do to alleviate symptoms? I know from all my research that there's not really a cure, but do you do anything to manage the fatigue? My friend who has fibromyalgia said when she has a flare up she exercises harder to increase blood flow. Is this advisable with ME? I want to exercise but it's so hard to summon the energy!

9

slow and steady with CFS.. if you overdo it you will have a relapse and be worse off that when you started.. just dont stay in one place is my best advise.. in others words try to keep moving forward with what you can do.. if its just an extra 5 minutes of walking a week.. an extra 2 mins hoovering... just keep moving forward otherwise you will end up stuck!! Good diet and overall nutrition, supplements... and pacing.. do a bit.. rest a bit.. do a bit more.. rest a bit more.. its the only way to build up tolerance so you can do more. The aches and pains will come and go, as will the fatigue.   You will also find new symptoms get thrown into the mix from time to time.  Its a tough road.. but if you try and stay positive.. concentrate on the things you can do, and dont dwell on the things you cant.. you will do OK.

10

I also have a friend with fibromyalgia. I have CFS/ME. One big difference between our illnesses is that she can exericise without relapse, and I can't. Be very careful with the exercise and with any activity. You can make yourself worse, if you do have this illness. Your symptoms sound very much like CFS/ME. Go to a specialist if you can, to get diagnosed.

11

Ditto that

12

I pace myself and rest when I can.

I do go on my bike which I really enjoy, but it is such an effort sometimes, so just take it slowly. It relieves stress and gives me time to think. I rest afterwards, sometimes stay in bed for 3 hours. I am a textile desingner so I will sew or do designs whilst in bed.

I have tried amygdala re-training. Dr. Gupta Ashook you will find him on the inernet. It did help up to a point.

Alison

13

Thanks for your replies on allieviating symptoms. I also have a question about the cause or starting point of your CFS. Most research seems to say it is triggered by a virus or infection that you never end up recovering from. I had no such thing, although some websites say trauma or stress can trigger it. The only thing I can relate to the time my chronic fatigue started (around 8 years ago) was the beginning of my parents' marriage breakdown. I was very heavily involved and have been ever since. Could this be a cause? I'm just trying to get all the facts so that I don't go to the Dr saying it's definitely ME when it might not be.....

14

My daughter is now 30. When I was expecting her at 3 months I got a spotty virus, The baby did not sleep much for 4 and a half years, she was also an unplanned bab and my husband wanted me to have an abortion, I did not go ahead with that. All this stress lack of sleep and a virus I think brought about my M.E. (Our daughter a fourth child is lovely and the thought of never having had her is unthinkable.) I have never been right since, the thing is I just don't know, but I think it was the trigger.

Alison

15

Hi Nacho,

virus infection is not the starting point in all CFS cases, and muscle pain is not necessarily there. I have hardly any, and what I have started as a so called tennis elbow.

Becausse you suffer from cold, take another look at your thyroid hormone levels, too. Expert endocrinologists consider TSH values below 3 as abnormal, while T4V can still be quite high - at the level of 13-16. If you feel constantly cold like I do (except when at home), you are likely to suffer from some level of hypothyroidism (which often coexists with CFS).

I use low-dose naltrexone to remove fever and sore throat (and tennis elbow pain); D-ribose and acetyl-L-carnitine to prevent so called crashes (of extreme) tiredness. Search for "LDN fact sheet" to learn more.

16

My CFS/ME was definitely caused by a virus and stress. I believe there is also a genetic component to this illness.