Feeling a bit desperate

[JaneC]

Having a particularly bad time with chronic fatigue syndrome at the mo, which is making me feel both anxious and depressed. I've been on 40mg fluoxetine for a few months and it has helped so much but I'm struggling again. Does anyone have any experience of being on 60mg? Or any other comfort or advice?

I'm going to see an alternative practitioner in a couple of weeks and it's only the thought that she might be able to help me that's keeping me going really :wall:

[ElizabethJane]

:flowers:Dear Jane ((((hugs to you)))) I dont really have any advice to offer. I'm really sorry that you have the cfs to deal with on top of everything else. I'm not taking fluoxetine but do have experience of acupuncture (for my back but only one treatment) plus seeing an osteopath and hypnosis. Let us know how you get on with the therapist. EJ.

[JaneC]

Thanks for replying EJ. I'm sure I'll bounce back up at some point. Working three or four days a week takes so much out of me, it's a struggle to get my brain to work when I'm there, and I just get so frustrated about my lack of energy.

Unfortunately money's very tight in my household so I don't have much scope for trying alternative treatments and I'm pretty much putting all my hope in this one thing. Counting the days...

Thanks for your support :hugs:

[KK77]

I have a combination of fibromyalgia and CFS on top of my depression so I sympathise Jane and truly hope you start to feel better soon with your treatment as I know we haven't all got money to throw around on private care.

[PoppyC]

Hi Jane
I hope the alternative treatment works for you. Don't give up - Keep hope & faith that you will eventually feel better and that things won't always be as they are for you right now.
:hugs::flowers:

[ElizabethJane]

Dearest Mel if you are having a dig at me!! My hypnosis is via an NHS referral, and yes my osteopath appointments are covered by BUPA. For your imformation it is hubs job and not mine that is in the scheme (and my psychiatry is not covered as I am deemed a chronic and complex case) Just thought I would put the record straight. And yes I am eternally grateful.

[ElizabethJane]

sorry and we still have to pay!!! it is not freeee

[KK77]

Dearest Mel if you are having a dig at me!! My hypnosis is via an NHS referral, and yes my osteopath appointments are covered by BUPA. For your imformation it is hubs job and not mine that is in the scheme (and my psychiatry is not covered as I am deemed a chronic and complex case) Just thought I would put the record straight. And yes I am eternally grateful.

No, actually I was referring to Jane's post dearest EJ.

[ElizabethJane]

Jane what job do you do?

[suzy-sue]

Jane you can always ask to be reffered to the pain clinic at your local hospital .I know of people who have been able to get Acupuncture this way on the NHS .Ususally when the pain isnt responding to other treatments that have been offered .It would be worth asking your Gp .Good luck Sue x

[JaneC]

Thanks everybody, you are all so kind :bighug1:

Trying to rest up a bit, but it's hard to know if sometimes that just makes you worse. June 2 (my appt with the alternative woman) suddenly seems quite far away, might make an appt with my Gp on the fluox front meantime.

Mel - how long have you had cfs? Do you know what brought it on? Have you found anything that helps?

EJ - I'm a journalist, a newspaper sub-editor, so it's long shifts on a PC, requires lots of concentration and brain work. On the rare occasions my brain does actually work these days lol. It is very tiring but I can't afford not to work and I'm a casual worker these days, no paid sick leave. Mostly I work three days a week, sometimes a bit more but an extra really takes its toll.

Sue - Thanks for your suggestion but I'm not to badly bothered by pain, just feel so damn tired!

I really hope I have good news to report after my trip to this clinic.
:grouphug:

[KK77]

I developed it after my fibro started, Jane (although I've been told that the two conditions can overlap). I find it's a lot worse in winter and the only relief is keeping active and exercising. I haven't found any drug therapies that have helped unfortunately.

[JaneC]

Thanks Mel, mine seemed to develop after I had what the docs said was labyrinthitis. I've tried loads of supplements with very little luck except maybe with Korean Ginseng to a degree but I had to give that up after I went back on Fluoxetine. The woman I'm going to see has helped a couple of people with cfs, one I;ve met and one I had a very long chat with on the phone. I'll be sure to let you know if she turns out to be some sort of miracle worker lol x

[KK77]

I think that fluoxetine is one of the better ADs for CFS as it's quite activating compared to cit and paroxetine. It never agreed with me though (gave me insomnia - can't win lol) and I'm now on sertraline, which has been by far the best out of a pretty bad bunch. I tried a few TCAs too but apart from lots of nasty side effects, they never really helped. I notice that you're on a high dose of fluoxetine - has it helped the CFS?

As for supplements, the only one that helped somewhat was Ginkgo Biloba but I couldn't justify the benefits over its cost so stopped taking it. I tried Ginseng but it caused insomnia and made my mind race a million miles an hour! High dose Vit B Complex is supposed to also be good but I find it interacts with my meds (although it could be my imagination!).

I hope that this woman does turn out to be a "miracle worker" - there just aren't enough miracles to go round! Let me know, Jane.

[JaneC]

Hi Mel, I've been reading that scientific studies have shown that fluoxetine is no help at all for cfs but it's definitely given me a lift, although I've had to go up to 40mg this time when 20mg did me fine some years back (long pre-cfs). I'd been on a trycylic (clomipramine) for about seven years until last autumn, but it didn't seem to be working too well any more.

I think have had more energy at times at least since I got settled on to the fluox, but maybe sometimes that means I overdo it a bit and pay for it later. Having a real blip or something at the moment tho. Probably crazy but going downhill seems to have coincided with getting one from a different manufacturer with my last prescription. Clutching at straws :wacko: but I've requested a new prescription which I will take to a different chemist. I have a friend who found sertraline helpful. At my docs it seems you either get fluoxetine or citalopram and that's it.

Sorry for the long blah... I found gingko seemed to help the brain fog at when I was working but chucked anything with a serotonin connection after a horrible PA in the early days of fluox. As you say, it's hard to work out what's causing what at times. I mentioned elsewhere that CoQ10 makes a big difference to my husband's (MS related) fatigue but didn't seem to work for me. Maybe I didn;t give it a proper chance, as he takes high doses and the thought of the cost of us both taking it was quite scary.

If only we could afford a hol to the US. We brought a stash back from Florida a few years ago as it was much cheaper there. We expected a grilling from customs on the way back in but nothing was said lol.

[JaneC]

Well, three and a half weeks into taking the minerals I was prescribed - and I think I might be feeling a little better :yahoo:. I often am unable to get out bed on a Sunday. Yesterday, I watched both World Cup games, washed the kitchen floor and cabinets and did a huge ironing, including all my son's holiday clothes. Just hope I don't pay for it today! I also had a better week last week in terms of getting to sleep at night and it's been less of a struggle getting my brain to function at work.

All of these things make me feel less depressed and anxious. The woman I saw believes my problems stem back to when I had anorexia between 20 and 30 years ago and there is a theory behind this treatment that the longer a problem has existed, the longer it takes to resolve., so I am not expecting a quick fix but any sign of progress is soooooo welcome.

[JaneC]

Two months of mineral therapy, have worked 5 days out of the last six and coped amazingly well. Didn't even get much of a rest on my one day off. It's not exactly cheap but I don't grudge a penny of it if I continue like this :emot-woot:

[mcclan]

hi jane just been reading thru your things and not sure whats going thru your mind at the mo but as im a person who does not trust any kind of meds. if its soming your focusing on all the time and not focusing on others things. the main thing your focusing on is making you feel this way. any questions please ask dave

[JaneC]

Hi Dave, glad you are finding your way about now, hope you are getting some benefit from the site. I totally respect - and admire - people who don't want to take meds but for me they have literally been a lifesaver - and actually allow me to focus on and get on with life. I've had CBT, done self-hypnosis, seen psychiatrists and psychologists and while all those things have helped, they have never been enough.

The alternative practitioner who prescribed the minerals I am taking believes she will get me off my prescription meds over time. I live in hope! x

[JaneC]

Off to see my naturopath tomorrow, so it's three months since I started celloid mineral therapy for CFS. the change in me in the last few weeks has been astonishing - I've had tons more energy, mentally and physically. It's like having a whole new life! I still fear "crashing" at some point but so far it's onwards and upwards. Please keep fingers crossed for me that it stays that way.

[KK77]

So pleased it seems to be working Jane. I must be honest and say that I had my doubts when you started this new course of therapy but watch out cos Mel may be joining you soon... Is there enough room for two lol?

Yes, onwards and upwards - wish you all the best.

[JaneC]

Honestly Mel, I'm a natural sceptic and had huge doubts myself, even having spoken to people it had worked for. Before my first visit I was petrified that I'd find Rosalie too airy fairy or something and wouldn't be on her wavelength. In fact, she's very down to earth, eg has no problem working alongside conventional meds and didn't bat an eyelid at my 20-a-day cigarette habit.

This is a list of the 12 salts and what each is supposed to work for http://www.biochemic-cell-salts.com/12-tissue-salts/

The ones I take are made by a company called Blackmores, which you have to get through a practitioner. Holland and Barrett sell a New Era version, which are about half the price, but I'm sticking with what I know works at least for now, and I also have no idea if just picking out what you think might help would work as opposed to having someone like Rosalie prescribe them, based on the tests she does on you.

I've recently discovered that there is a celloid mineral practitioner in the next town to me, as opposed to two hours away, but again I found Rosalie through personal recommendation. She can test you by post (I can explain more if anyone wants to PM me, I can also pass on website details.) It costs about £100 for a test and I'm prob about £25 a month for minerals. Can't really afford them, but can't afford not to have them either.

Hope it is ok to post all this and sorry if I've been banging on, but this has been such a revelation.