2 years on and pulling hair!

Brain and nerves
1

First time for me on any group. After some guidance/opinions.

my history is that 14 years ago my brother died with cancer. He was 36 I was 35 . About 18 month after I suffered extreme fatigue couldn't work much at all and was in the process of investigation when we emigrated. The consultant didn't give me an opinion just said moving is the best thing I can do for my health. After about three more years I began to gain strength and became almost the same busy energetic woman I have always been.

2010 my mum was diagnosed with lung cancer. We were very close, she lived with us her and I nursed her when the time came after lots of chemo etc.

she was sick for about 17 months. She died sept 2012.

March 2013 I was struggling again with total fatigue, wiped out type tiredness. Aching muscles painful joints, poor concentration, head ached, visual acuity not always good, worse when more tired. Unable to work much at all. My husband does almost everything and I feel incredibly guilty.

gp thought depression after bereavement . I had my doubts but agreed to try anti depressants and I paid for private counselling as I believe the two therapies go hand in hand.  Now I feel no better, if anything worse and have had bloods 3x all ok .  After agreement with psychiatric consultant I have been referred to my go and at my request referred to rheumatologist.

i await an appoint,net. At times I begin to think I am imagining all this. Some days better than other but if I try and ignore it I pay for it.

i guess I feel a need to know what is wrong. The thought of living with this indefinitely is horrendous. We are trying to run a business and as I am overseas there is no financial support.

i am sorry I know there are many of you with worse symptoms but your opinions would be very gratefully received. By the way my hubby is extremely supportive and understanding but I know he is finding it hard too.

2

It is likely that CFS-type symptoms can result from a range of causes, many of which are not well understood or readily identifiable. The timing could indicate that bereavement played aa role, or it could not. Regardless, I don't think it's fair for you to be feeling guilty about your health - whatever the cause, that can only make you feel worse.

Sory I don't really have any advice - best wishes though.

3

Thank you Fidd, your comments are appreciated. I guess when I know what I am dealing with I will just get on with it and manage it as effectively as possible. I have a friend with fybromyalgia and she is convinced I have that. So many marginal overlaps with illnesses. Thanks.

4

Hi, I obviously can't tell you whats wrong, but I can tell you that you are not imagining it.  Our stories start out very differently, but I have similar progress and thoughts to you in as much as sometimes I can do more and yet other times I can do practically nothing (am also currently awaiting an appointment with a rheumatologist).  

The times where I feel better I start to wander if i'm imagining it, or perhaps I could cope better in the bad times if I just tried harder.  But then when the fatigue and pain hit you really hard again, you realise that would be impossible.  I'm doing much better these days, getting up earlier and doing more throughout the day, but I still tire easily and take regular breaks and I still get my really bad days where I can't get out of bad early due to spine/neck pain and/or headache, but they are fewer than previously.  

My other half has his own business which I am hoping to get myself to a point where I can join him in the future, even if just on a part time basis or helping out to take the pressure off.  Until recently he was also taking the strain around the house a lot, he enjoys cooking and still does a fair bit, but im glad i have been able to take on more on a daily basis, as I know what you mean about feeling guilty, its a useless ugly feeling, but you just can't help it.  You feel like you should be able to do more, but then come the days (or weeks/months) where you just don't even have the energy to try. 

It's not you and it's not just in your head.  Yes you have been through an awful lot and i'm sure it has played its part, but you have done all the right things to try and get yourself back into the swing of things, it sounds to me like you have tried all you can and thats all anyone can ask of you.  

I manage my symptoms with a very low carb/sugar diet, but I stress it is only managing my symptoms and not curing me.  I don't necessarily believe starches/sugars are causing the problem, my best guess is that processing it is possibly just an extra stress on my system that my body doesn't cope with very well.  I know there are differing opinions on this diet (and of course its not the answer for everyone anyway) but its helping for now, my insomina which I have suffered for years has gone away almost completely and i'm actually partaking in mornings these days.  It can still take me 2 or 3 hours to feel like i want to be part of the world, but at least when that process begins at 7am rather than 10 I get to see more of the days, i'm thankful for that at least.  

I hope we both get some answers from the rheumatologist even if whatever it is just going to be helping and not fixing.  Good luck

5

dear Padiwhack, it does seem possible that you have a second bout of CFS/ME and maybe mild Fybro if there is such a thing as mild Fybro.

I would suggest you browse the Group's Discussions. It will give you a good impression of the breadth of symptoms as well as the most common ones. Not pushing yourself does seem to be a universal component of recovery.

Self doubt is a frequent stressor. Yet the evidence for the reality of CFS/ME is extremely well attested by a huge number of praviously healthy, energetic and well motivated people. That such people should choose to be lazy is abserd. That medical people should still think so is a disgrace but it can be said in mitigation but not exoneration that there is nothing in their box of pills that deals with this horrible ailment.

I wish you success in your research and the patience and fortitude to make a good recovery.

6

Dear GeorgeGG

Thank you so much for taking the time to message me. I guess I know deep down it is not my imagination but I guess when people make comments unwittingly it gives me doubts. You need a routine, you need to do more. You shouldn't sleep during the day. You should get exercise etc. etc.

I will make the time to browse. Thank you. I just hope the consultation is a positive one when I get it and with professional support I can work through this.

I look forward to feeling some normality. Last September I had about three weeks where I felt much better and my husband said " it is a relief, and lovely to have you back"

It's even having the energy to bother to converse sometimes!

Well thank you

7

Wow Kirsty,

It does sound like we have some parallels going on!

That makes me feel like I'm not alone in this - not that I wish you to be experiencing this horrible set back too of course.

It is encouraging that you are able to get up a bit earlier. I so when I have to but after the morning then I have lost the afternoon.

Do let us know how your consult goes and good luck.

8

Hello Paddiwhack;   I think the first reply that you will receive from ALL of us, is that NO, it's not in your head ! For myself, you seem to have gone down the Exact same path as I....you know that there is "something" wrong with you, but just can't find an answer, and go through ALL the testing that is available to the Health Industry, including Lumbar Puncture for MS, etc etc; and still no definitive answer...but you know....and yes, this forum, and all the knowledgeable people will guide you, and support you,  for there are quite a few who do their own research, and take info to their GPs and Voila...you come away with an answer to your questions/feelings.  Your symptoms, and tiredness certainly sound similar to mine...and I know that I fit into Fibromyalgia and Chronic Fatigue; and although some doctors don't agree totally with these diagnosises, you yourself will know...keep typing to us, and work through your feelings .....hear back soon...Bro

9

Me back for a further titbit...I feel I should add that what you experienced in your family, I too had to deal with same issues, and what I feel to be the causative factors...we were too hard on ourselves, both emotionally and physically...and our bodies' are now trying to tell us so.....the medications that I find help me the most for the Pain, is ENDEP ( amitryptilline) and some valium for the stiff/sore muscles at night-time....please be GOOD to yourself, for if you did what I did, and decide that you are "feeling a little better", and go back to your previous routine, you will only aggravate the condition....it has been 21 years since this all started, but it has been the last 10 that I have found the worst, because I ignored my probs earlier....Fibro can get worse if you don't look after YOU first.....Bron

10

Hi Bronwyn

Thank you so much for your lengthy and informative post.

I am trying to pace as much as possible. It is hard though I appreciate if I don't take action the situation gets worse and to be honest I am at a point where I cannot physically do anymore than u am doing. There does seem to be a bit of overlap with the fybromyalgia /ME symptoms. I really appreciate the support of this forum I don't feel quite so alone with it now. Someone suggested the Q10. Enzyme??

Have a good week yourself.

11

Yep...I too feel like I should be looking into the Q10 enzyme, as I also take Crestor (an hereditry factor of LDH which my other 2 sisters have also), and it is advised to be taken with any Statins....just one of those other Things I need to look into/research/try...another pill to pop???  keep us all informed on how you are progressing, as I know that ALL of us are always interested how each other is doing, and any progress that is made.   Till next time,   Bron