M.E, depression + glandular fever link?

Mumstheword

Well, we've lost a fair few posts on this discussion, but never mind.

Has anyone any comments re the co enzyme q10? (I'd forgotten I'd asked about that!!)

Carnitine update...I've been using this for about 5 or 6 days now, and taking 2 first thing and another at lunch time. ted had mentioned that they could keep you awake if taken at night. I've had an odd reaction to them in that I think I have more energy, although my eyes feel very heavy as if i am very tired. I am usually more affected by weakness and feeling drained than feeling sleepy. It's a very unusual feeling for me to be ready to sleep before my body has run out of energy, it's usually the other way around!
I will carry on for now, and report back any other reactions!

Phoebs

Mumstheword wrote:

Well, we've lost a fair few posts on this discussion, but never mind.

Has anyone any comments re the co enzyme q10? (I'd forgotten I'd asked about that!!)

CO Enzyme Q10 - takes a good two or three months to properly get into your system and working, so persevere with it

I found it really useful for energy levels - until brainfog took over and i wasnt remembering to take it regularly

Like all supplements and alternative/traditional therapies it will work for some ME / Fibromyalgia sufferers, it wont for others and for others still it will worsen symptoms. Sounds rough but with ME or Fibro you just have to come to the acceptance that this is life, and if you're fortunate enough to find somethig that works stick with it until it doesn't work for you any longer.

If ME (CFS Fibro whatever else it gets labelled - I've been fgiven a multitude of labels) is bad enough to stop you working, as it is with so many of us, money is tight, energy and resilience are low and all you want is to be normal again........... my advice to anyone is take on peoples recommendations but read up as much as you can, ask around etc before you try something new, above all make sure it isn;t going to counteract with anything you are already doing, speak with your gp if you are one of the lucky ones to have a gp worth their name, and then only then give it a go........ but dont spend too much money, its all too easy to do

Frances_O

I suffered from Glandular fever about two years ago, and had it twice. Since then I never have much energy, and I now have a ten month old baby and it sometimes seems like it's getting worse!
My doctor tested my thyroid etc, and couldn't come up with anything, then I found out I was pregnant and it was kind of forgotten about, as I was tired all the time during pregnancy, but the tiredness was just put down to being pregnant! 10 months on, I still feel as bad.... I get worse during winter time, and have suffered from depression on and off since I had glandular fever too.
Reading this post, I think I may go back to the doctors now, and try to get them to find out what the hell is wrong with me! Lol
I just wake up, even after 10 hours sleep, and still feel exhausted.
Sorry if this has taken away from the direction the post was going, but I just thought I'd get it off my chest and tell someone....!
Fran
xx

Mumstheword

Hi Frances_O, welcome to this thread.
don't worry at all about having a rant on here- helps sometimes doesn't it!
Firstly, I hope that your gp can be of help- and diagnose something easier to treat! However, waking from a good night's sleep totally unrefreshed is a symptom of ME. It's probably symptomatic of other things too. Part of being diagnosed with ME is having lots of other things ruled out, and also having suffered for at least half a year. The glandular fever link is how I ended up with ME.
But during pregnancy, I felt exactly as my consultant ME specialist had said I would...in better health! I was the usual pregnancy tired, but my other symptoms eased.
If you need to chat, feel free to pm me.
xx

Ted_Hutchinson

Insomnia Tips for Those with Chronic Fatigue Syndrome

pennyforthem

Mumstheword wrote:

Spot on.
And that's why I lost out on permanent health insurance and dss payments once they started investigating my case and making life difficult through stress!

The CAB's job in part is to help people like you to prepair your cases !

I found the CAB incompetent which does not mean yours will be! And their are other servises available to you, you can usually find an advertisement on walls in medical areas were the patient may be descriminated against or unable to mentaly defend themselves against anything. You could also try the disability website they may offer help or know someone who can. If this all fails I would get in contact with my Doctor and explain that you are having problems with the forms/timescale/health and if he can offer no advice or help at least your problems with this process will be noticed rather than suffering in silence it may also help your case.

Cat72

Hi Frances
Im sorry to hear you have been feeling ill for so long. Especially with a baby it must be a huge strain. I have started reading up about ME and there is a very strong link with Glandular fever especially more so if you have had it twice. Although my pal had glandular fever and it took her about two years to recover. I have just got a good book by Dr charles shepherd about ME and it mentions the Glandular fever link. Its good for all sorts of advice. You could probably get your Library to order it for you or its £10.99, worth every penny.
Please just pester your doctor it is hard but I keeped going to every doctor in my practice till 7 months later I finally got one to listen.Its important you get an explination for your own sanity and also so you can be strong enough for your baby. Good luck x.

metro_gnome

This may be a long shot, but I have just started wearing a magnetic bracelet for my aches and pains (long term back problems!) and have noticed a distinct increase in my overall feeling of well-being and energy. I was introduced to it by a colleague at work who had been unable to work because of arthritis and who is now loads better. I have sent one to my daughter (see starting post on this board) and though she isn't sure whether it is working she has told me that she is starting to get her life sorted, she's making more of an effort to get fit and she walked up a long, steep hill carrying books and shopping the other day when she would normally have taken a taxi! Coincidence it may be but it seems unlikely to me. When she gets home from Uni I'll get her to take it off for a few days and see what happens. If anyone fancies trying one of these get in touch and I'll give you details (don't try any magnetic bracelet, some are much better than others)they do have a 90 day money-back guarantee so there's not a lot to lose.

BaritoneUK

Great! Thanks for this thread- So much to read, I know now I am not the only one struggling with this one...

JayS_3

Ted_Hutchinson wrote:

For any medication to be effective it will by definition have reaction. Anyone getting advice from a GP must be aware of the advertising which has gone into providing that GP with the information on which to make a decision. See Which report and Health Matters In fact prescribed anti-depressants are only 18% better than a placebo and Antidepressants cause sexual side effects for nearly 40% if you think you are going to get unbiased information from your GP you will be mistaken. I am not against people taking antidepressants, I've taken enough of them in the past, but one should be fully informed as to the risks and make a judgement by balancing the risks. I'm not saying Johns Wort is without risk, but adequate warnings are given in the Zipvit packaging and catalogue as is the case with prescibed medications.

I would just like to comment on Ted's answer about drugs reaction.

Sarahsaver correctly said "remember St John's Wort reacts with many other medications, and I would always advise your GP as first port of call."

St John's Wort can induce drug metabolising enzymes and a number of important interactions with conventional drugs. The amount of active ingredient can vary between different preparations of St John's Wort and switiching from one to another can change the degree of enzyme induction. Furthermore, when a patient stops taking St John's Wort, concentrations of interacting drugs may increase, leading to toxicity. Antidepressants should not be used with St John's wort because of the potential for interaction.
Source: BNF44 Sept 2002

It goes on to list interactions with different prescribed drugs in these catagories: antibacterials, anticoagulants, antidepressants, antiepileptics, antivirals, barbiturates and primidone, caridac glycosides, ciclosporin, 5HT(1) agonist, oestrogens and progestogens, and theophylline.

Therefore, as Sarahsaver, advised it is very important to talk to your GP about this drug to ensure it is not interacting with another drug you are taking, or at least to be aware of the possibility of interactions and their implications.

I would further advise that you inform your consultant well in advance (months) if you are scheduled for surgery or other procedures. St John's wort needs to be figured into the equation at this time too.

I don't wish to scare anyone here, just to ensure anyone contemplating taking St John's wort or are already taking it, talks to their GP.

Best wishes

JayS