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CFS/ME - why does nothing work????!!!!!!

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Chronic Fatigue Syndrome
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Posted 7/23/2006 4:41 PM (GMT 0)

Hi guys...

 

I'm totally new to this game so bear with me if this posting is pretty useless! I'm having one of "those" days!

 

I'm 23 and suffer from CFS, along with migraines that last for days... Can anyone help?

 

I was diagnosed with CFS last year and was told that it had been triggered from a nasty bout of glandular fever I had when I was 14. I am currently taking Amitriptyline to help regulate my sleeping patterns and joint pain but they do no good. My doctor is completely useless and had passed comment a few times that "CFS is all in the mind anyway".Other doctors seem to have no clue as to what to do with me.

 

 Does anyone have any tried and tested remedies they can share with me?

 

Cheers! :-)

Posted 7/23/2006 5:38 PM (GMT 0)
Welcome HairsprayQueen. I'm sorry that you are struggling so much with CFS. I got CFS after having mono/ebv (which I believe is another name for glandular fever). It definitely sounds like it's time for a new doctor, but finding a good one can be hard. Have you tried a rheumatologist or a good internal medicine doctor? First of all, don't ever believe anyine who says that CFS is all in your head". If we could make ourselves feel better, we would!!! Amitriptyline can help with sleep, but if it's not working and you are still having pain then I would hope your doc would give you some kind of pain med. I wish there was something that worked well for CFS. You might want to read some of the more recent posts by Orion. Orion recently read a book that has been very helpful. Let me know if you have any other questions. Just know that we are here for support whenever you need it. Take care
Posted 7/24/2006 6:29 AM (GMT 0)
I found a few things helpful for me....
I don't however get migraines (thank god) but the pain and fatigue I get my fair share of...

I take DHEA (love this stuff) for the fatigue...it takes the edge off...you will not be running marathons by any means but you will feel so much better. I take 25mg every morning. You can get this at any G.N.C, some brands don't work the same though. I've found the best is CAL---compounded- You can find that at any natural medicine store.

Also Klonipin seems to help with leg aches and pains the best for me...

The doctor had me on Adderall, which helps also but can make you really jittery and a lot of people are scared to prescribe it because of state regulations and addiction problems with stimulants

Vicodin helps with daytime pain. Without this it would be hard to function everyday. I know that pain pills are extremely addictive, but being able to function is what we are really here to do right?



Not the topic but Hippimom2----I also have suspected lupus and recently diagnoised on the onset with raynauds as well. I can't take planaqueil though because it really upsets my stomach majorly...so I use the DHEA instead. Was the ANA test for you positive??
Posted 7/24/2006 1:51 PM (GMT 0)

Hi again,

Thanks for your advice! It's nice to come across people who know what they're talking about as opposed to those "Oh, pull yourself together" types!

I see you have been talking about Lupus/Raynauds... I have "mild" Raynauds - it seems to run in my family! The best thing I have been given for it so far is Naproxen which seems to ease the swelling in my fingers somewhat. I have also been tested for Scleroderma which can sometimes be part and parcel of Reynauds phenomenon but haven't had the results yet. My sister has Reynaude, Scleroderma and Lupus. She used to have to have prostecyclin infusions and no medications seemed to give her any relief. She now has a spinal cord stimulator which has been a great help to her. After being on the sick for 10 years she is now back at work and doing really well. There are meant to be a number of herbal remedies that work well for Raynauds and give your circulation a boost although I have gastric problems too so can't take anything like that. I also took Warfarin for a little while to thin my blood and it really helped my circulation. The Raynauds and Scleroderma Trust here in the UK also sell some quite fancy devides such as battery operated gloves and socks, etc, which really help in the winter although they can be a bit heavy!

Hippimom2----that's such a cool name! I bet you get fed up of that - I noticed that smeone else said the same thing on an earlier thread!

Posted 7/24/2006 10:09 PM (GMT 0)
Ginger, thanks for sharing what has worked for you. I have been curious about DHEA for a long time and even bought a bottle once but was too chicken to try it (I was afraid I'd end up with a beard, lol). Maybe I'll talk to my rheumy about it the next time I see him. My ANA is positive and I've been on plaquenil for about 2 years. It upset my stomach a lot for the first month, but then it settled down. I do think that all of us with cfs have to pay close attention to our health and be very aware of new symptoms and get them checked to make sure you are not developing something in addition to CFS. HairsprayQueen, I've been online looking for heated slippers and gloves that I can wear in the house. We're having a really hot summer right now, but my feet and hands still tend to be cold. It's nice to see a few new people here on the forum. For some reason the CFS forum is usually pretty slow (maybe we're all too tired to post much). Take care
Posted 7/24/2006 11:02 PM (GMT 0)
Did you have any luck in your search for heated slippers and gloves? You may have already come across it but the Reynauds and Scleroderma Association are really helpful. They sell reusable handwarmers, wrist warmers, fleece mittens, silver socks and gloves (tried and tested! They've been really useful and aren't badly priced), heated aromatherapy cushions and also just really handy things like key turners, can and bottle openers, etc... You can download a mail order leaflet that shows their full range of products and also an order form from their website. Their email address is: [email protected].
Also, BeWell, Cosy Feet and Best 4 Body are good sites to check out if you haven't already. They do a wide range of products at reasonable prices. Let me know how you get on.
Posted 7/24/2006 11:58 PM (GMT 0)
I haven't gotten any gloves or slippers yet, so thanks for the information. Some of those other gadgets sound kind of neat too. I'm already making a mental Christmas list for hubby.
Posted 7/25/2006 6:05 AM (GMT 0)
DHEA is GREAT.....

My mom has Fibro (she claims medicine never works even when she hasn't given it any time) she even said this has helped a lot as well...

I would start off with 25mg if that doesn't help, then raise it up about 10 mg or so more. It does wonders though.

Also, I read in a book "women and autoimmune diseases" which I recommend to anyone because it was wonderful. Anyway a lot of people with raynauds have great relief with Parfan ( I don't know if I'm spelling that right) It's something you dip your hands into and it immediately heats the hands and leaves it smooth and soft....

Also hairspray, I have a lot of those around me that think "get up and get moving and you'll be ok" My dad happens to be the main one. I use to argue with him, trying to defend the way I felt, but in time I found it was not helpful. So when he tells me to go out and excerise. I just say "that sounds like a great idea" and that I will get right on top of that lol........shuts him up for awhile which is all I really need :)

Hippimom?

Where do you live? I'm just wondering since you said the heat was terrible this year. I'm in texas and we're having a hot summer as well (of course we always do)
Posted 7/25/2006 8:12 PM (GMT 0)
hi!!!

You guys sound like you know what you're on about!! So... whenever my sister (14, had CFS for 18 months) starts working herself up again, always something gets her back to square one. I find it really hard to stand by and watch her like this because it makes me cry, and I know I can't cure her, but apart from standing by her and putting blood sweat and tears into helping her, what can I do?

I'm finding it really hard!!!

Yvee x
Posted 7/25/2006 9:45 PM (GMT 0)
Ginger, I've actually gotten a chance to use parafin on my hands and it felt amazing. I think you can use it on your feet too. I guess you can buy the crock and the wax at stores like Walmart (one more thing to add to my Christmas list). I live in Iowa and although the summers are usually pretty hot and humid, we are part of the big nationwide heatwave with a lot of days with above 100. Out poor lawn is getting brown and crispy. I forgot to ask the rheumy about DHEA yesterday because there were so many other things to ask him about , but I would like to know what he thinks. Yvee, I wish there was more to help your sister. Does the doctor have her on any medicine or have any suggestions that might help? It must be so hard to watch someone you love going through this. CFS is so hard because if you push yourself too much too fast your body will crash.
Posted 7/26/2006 5:12 AM (GMT 0)
Yvee:

The best thing you can do for your sister right now is what you are doing and that's emotional support. Make sure she still tries to get out and do things though even though she doesn't feel like it I'm sure. Also, along with that...she needs to know the limits which is different for everyone.


Hippimom: Iowa is 100 degrees right now! WOW, that's expected in texas but Iowa??? The heat zaps all my energy out and the cold stiffens me up so I'm screwed either way lol

Most rheumy's will not tell you to use it or not to use it. I read in the book they are talking about taking it off the shelf and needing a prescription for it but they be a while now but I'm going to stock up just in case the dr that I see doesn't agree with it, but I think in most instances they encourage it because of it's "good feeling" that it gives back to you even though it may not actually be honestly helping the inside.
Posted 8/15/2006 9:51 PM (GMT 0)
Paroxetine is working quite well for me, my doctor also said the Cognitive behavioural Therapy is quite effective. Ive found diet to have an effect too.
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