Please advice.

Brain and nerves
1

Hi all, need a little help here. Not sure about what could have happened or the order of things. A year ago I started with a great tiredness and memory problems. Have tried rest for months and nothing, I walk for ours and still tired, constant headaches, all sorts of pains. Changed most of my diet, tried almost every remedy online and nothing.

All blood tests normal, MRI normal so it should be related to depression. In my opinion that came after, but well, now is dificult. After a year working with all of that I had to stop my full time job to see if I can somehow recover. Neither rest or exersice seems to help. Maybe I just need some more time?

2

Hi, l think many, had the same problem myself, in having symptoms of fatigue, aches and pains, poor memory concentration, asstd symptoms that we know are not right and have been going on a long time, and it seems most gps standard response is blood tests and maybe scans, some will investigate further, others go into the phycalogical reasons, which are possible, but there are a lot of conditions that dont show up on blood tests or scans, many on mbs have been at same state, and later had cfs, fibro myalgia, for me intersticial cystitus, sure there are other conditions that dont show on blood test scans. l also agree that its often the symptoms that lead to the later depression or anxiety, which confuses it or gps use to confirm phycalogical,  l think a year is a long time to recover in.  l,m sure someone with cfs or fibromyalgia will come and respond with more info on symptoms, and advice. good luck

3

Hi there,

I think you are answering your own question there, about needing more time. I know its hard to give things up and let yourself recover. It takes alot of time and adjustment to get through this. Have you been told you have cfs/me? And if so are you being referred to a specialist service if they have one in the area?

Also, you have been working and exercising with this and thus maybe you weren't getting enough rest.?

Recovery from cfs/me is totally personal and thus something that works for one person doesn't for another. Whatever you do, be gentle with yourself.

Hope this helps

B

4

Thank you for your answers. I recognize at the begining of this that I was pushing myself to exersice and move forward until at some point I had to rest. Now I have been resting for months and trying to exersice while I can. By exersice I mean walk. Im trying to find out myself because doctors have no idea. Im not sure about the core of what I have, but the chronic fatigue is definitively one that captures most of symptoms

5

It may be worth asking for a referral to cfs/me service to at least have a definite idea. I had to ask my doctor to be referred as I'd been told my exhaustion was due to my accident and was expected. At 18 months later, I needed an answer and that was cfs/me. I've had to totally cut down on the walking but, so long as you see anything you have to do as a temporary solution, I feel things can eventually improve for so many of us that its worth sitting out a while.

B

6

You don't mention doctors or tests. You need complete bloodwork done to check for various illnesses. It would also be good to see a  doctor specializing in ME/CFS, like an infectious disease doctor or a rheumatologist. If all tests come back negative, you may indeed have ME/CFS. In the meanwhile, get plenty of rest and pace yourself. This can only help, no matter what the problem is.

7

Thanks, I havent seen an specialist yet, only two general doctors. Besides de neurologist of course. Blood works came fine, small deficiency in D vit, trigliceries and cholesterol moved but not terrible. Im worried about some type of dementia but doctor said is improbable due to my age. Im 39.

8

The memory issues are awful because they really do seem to mimic other conditions. Once you've talked to a few people all with the same issue with memory, it feels less like the problem is something more scary. But, Do ask doctor for any checks you feel you need. I'll be honest, I get annoyed when people depreciate the memory issue by saying its age related (only in my 40's) !

9

When I developed memory issues and other cognitive problems, I thought, great, I now have Alzheimer's in addition to ME/CFS. But, no. It's just another aspect of ME/CFS. Don't worry. You don't have dementia.

10

Hi Casiodss 

Im in the same boat as you at the moment, awaiting proper diagnosis.  Regretfully mine started as a result of Cancer, before it was discovered I had the worst fatigue in my life, which carries its on seperate lable as CRF  "cancer related fatigue"  following this I then went on to recieve Chemo which I personally believe is the rout cause but none the less a new condition. The fatigue was severe at the time but subsided within 2 weeks.  

Once the main effects of the Chemo had warn off, I was left with a very mild but coupable issue of memory loss, subtle difficulties finding words and the feeling of being tiered 24/7. 

This continued for about 14 months but at a manageble level that didnt interfer with my life very much at all.  Suddenly from out of nowhere the existing issues became extreme and now I cannot seem to do very much at all which is very distressing. I can only messure the fatigue at present as being in the middle of Chemo fatigue and CRF. 

Like you I to have a need to understand what it is and how to fight it.  

My last meeting with the GP was a positive one, they advice me that they believe there is an issue but cannot find out why.  I am to have an ECG and two further blood tests begining of January and then they said if nothing shows up I will be refered to a specalist. 

I've been trying so hard to secure answers that they even advised of one harsh fact.  That they may never be able to fully explain why or know 100% how to treat it. 

My approach now is to tackle the major symptoms as if you would an infection. thus far I've managed to reduce the muscle pain by having a nice chat with the local pharmacist and using other methods of relaxation - music, very hot baths, scented candles and the hardest thing at all - doing nothing.  I can say hand on heart that has managed to get the muscle pain under control or at least to a very dull ache. 

I'm stil trying to work out the two other major issues. Cognitive and tierdness. witht he tierdness I've tried regulating my sleep increasing and decreasing but that hasnt helped and insominia has now kicked in within the last few weeks which is making sleep control a tactic that I have to drop for the moment.  Energy drinks are a 5 minute wonder which I would avoid if you can.

Asking the experts. 

Thus far my quest for info has taken me pretty much around the world and the majority of emails have been answered.  Although I have not yet managed to find that one key question which will unlock the secrets or that they are not yet known or discovered. 

I read an interesting paper the other day with regards to CFS/ME and that a Chemo & autoimmue drug is being trialed as a possible cure.  Wouldnt it be a funny turn of events that what could be a potential cure is what I believe caused the issue in the first place.  Now there is irony for you.

as regards to depression and anxiety.  I am a firm believer that a smile a day extends life, and although I am not particualy anxious or depressed at the moment I hold that down to the ability to take the mick out of myself and my wife also enjoys a good ribbing so at least the household is full of humour.  I will say however frustration is a real thing but do try and make things as light hearted as possible.  

Remember whatever it is you have, you seem to be doing all you can, (like me you've altered your diet, taken charge of daily physical activities etc) if it was through choice and lifestyle that you have become lazy then it would be your fault..  This isnt none of our faults it is something which is inflicted upon and not as a cause for doing or not doing. 

Do please keep us updated and I hope that you can use some of this to help you through 

regards 

Andy

11

Thanks again for all your help. I will continue trying to fight this whatever is goin on now. Will try to find more help. Cognitive problems are definitively the worst part is getting hard even reading for a while...

12

As stated above l also found my memory probs started along with the other physical symptoms, so weird, l,d heard of short term memory loss, but this is like instant memory loss, as if a few minutes have not gone,

lve laughed about silly things l forgot,though didnt laugh when l left cash in the machine, being tight,  but l  did mention to gp about 

alzheimers, also mentioning poor coordination and concentration, l used to like reading, now struggle, short term attention span also. l think he knew that wasnt the problem, As with Andrew, despite tiredness fatigue, insomnia can be a problem, restless nights. l might add l also tried red bull, didnt help with energy, just talked more. the frustration is due to restrictions, bit like an old prayer, change what you can and learn to live and make the best of what you cant change, words to that affect, but most strive to do and achieve more, live in hope, and medical science does move fast, but possibly auto and immune conditions havent got as much research done spent on as major diseases classed potentially terminal.  l think and hope this is changing, at least l,m older, but for younger people its tougher. Keep battling and best wishes. 

 

13

Thanks lynne, yes this is really strong. Memory is like something to laught about. I cant remember minutes ago, yet alone yesterday. Now for example Im walking, I know I started two ours ago and remember my way. But cant remember the people I have seen in my way, its like a hardware part is not there and the information is not being stored.

14

Strange, like that time doesnt exist for memory, even when thinking back, blank.  This one did make me laugh. l went to xray clinic, in cubicle, clothes off, back opening gown and robe on, my clothes in basket, spend l5min on xray, go back to cubicle with my clothes, reach up to take robe off, oh no, l,d forgot it, left in xray room, l,d walked past 3-4 people waiting with my back opening gown, quickly dressed looked at those people to see if they looked shocked, disusted, laughing, all dead pan, maybe shock, that did make me giggle, But losing 20 quid didnt, l was asked whether it made machine  noise, if anyone near, not a clue.  Good your getting out, though dont overdo it, but would be easy to become reclusive, l now will myself  going out and plan as much as l can,  before so spontaneous enthusiastic and easy. Youll be ready to nap after your walk,

15

Yes, I wonder how it will be to notice if somehow my memory improves. Now I cant remember very well how was my good memory. So far I have only seen it going back but, will I notice if improves? Because at this time my brain is adapting to this state.

16

I also make sure that I walk every day, even if its down to the shop which is a mile away from my home.  Cant say I really noticed not remembering who you pass in the street but now you mention it, I cannot even remember who servered me in the shop.  

Being a creature of habit, I've routines that have been in place since I left home and needed to fend for myself.  These routines dont appear to be affected.  Every day living is where my issues appear to be the most.  I've been worried about using the cash machine so opt for over the counter transactions for the timebeing. 

Using card readers in the shop, I tend to check my wallet 2-3 times on my way out just to make sure that I put my card back in my wallet.  Glad I am not the only one going mad 

Funny thing is, last night the wife and I sat down to wrap the christmas presents we have brought over the last few weeks for our little girl.  I couldnt remember buying even half of the presents that I got for her it was a pleasent surprise cant wait for christmas day.

Like Lynne reading has become troublesome, although I am better mid morning to afternoons where I can indeed read a lot more then what I can do later in the day.  Is that something you also experience.?

I have to admire the fact that you can be a little spontaneous, its something that I am struggling with. I plan several things that have to get done before a certain time and date and try to slot them in. 

 

17

Ooooo ooooo sorry forgot to mention. 

Being rehydrated is sooo important in the memory issue fun and games.  Although you got to the toilet a lot more.  I seem to function a lot better once I've drank a gallen or two of water.  I mean you can push my belly any time of the day and it will make sounds like a filled hot water bottle.  

its one thing that has helped me a little. I think 

18

hi  This could be relavent to you, when l was recovering from C at the end of chemo and radiot l went to a day centre once a week, therapy etc, made a friend who had some of same pecularities as me, re we both found we made the same item exclusively, for me flap jacks, her lemon meringue, l also fancied chip sandwich nightly for months,  odd, but we,d both poor memories, a helper suggested we keep a diary, we told her we did, but forgot to look in it, lol,  was also told the after affects of C or treatment can affect memory, though mine worse along with other physical symptoms in last 2yrs, its 8yrs since C.  l do write a lot down of whats needed, a plan, or l,d be in town and lost to whats needed to be done and got, l do remember pin and phone no, helps. Yesterday not too bad and willed a few jobs done, then into town few pressies bought, today a bad day, tired, fatigued, slept, days that feel a waste, planning to join art group and do some art again.   l can follow daily routine fairly well mentally, l read that we can do most daily routine  things on auto pilot, but even my little dog will prompt me if l forget to put her food down, barking and her eyes moving to the fridge cupboard then to the floor, smart. l do get continual thirst, cant go for  half hour without a drink, non alcaholic l might add, shame thats gone by the board also. l see a rheumatologist soon, to see if shoulder arm pain is related to cf or fibro, now getting pins an needles with it, though like yours its not severe  dull pain most of time.   l remember the childrens parcel wrapping, best of times with children at Christmas, mine now adults away, so a quieter time. l,m sure you,ll have a great  time with your little girl playing with the toys, good fun.  Now gagging for a drink again.  

19

Wow thanks lynne. We sound alike and yes diaries are great if you remember to look in them. I use an app reminder on my phone to help. The alarm goes off if I don't delete what I needed to do that day.

Was using art myself until the condition got worst. It's the passion I refer to as not being able to carry out right now and I miss it more then my memory. Art is both calming and soothing. It's good for the soul.

Hope you get to it soon

Much love

Andy

20

l guess your of your age in being more sussed with tech, l,m not, took me an age to doing basic computer stuff, with sons help, anything beyond that and l,m at a loss, re setting up phone reminders, the worst thing is getting lots of instructions to use things, l0pages, turn off. My passion was gardening, also engrossing and calming, to me at least, many its a drag, l loved it, def can only potter now. But do need to do something creative, so will try art again. Sorry you cant do it now, but you know the best thing in life is children, best times in my life when mine were little,  interesting, funny, l envy you. Enjoy your Christmas with your little girl.