advice wanted please

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i have been diagnosed with me/cfs for 3 months now and i am really struggling day to day. my doctor has referred me to a cbt therapist at a local hospital as my moods are low,which i suppose on occasion is true,but i would describe it more as frustration.

i no longer have employment as my manager decided he only wanted full time staff and i seriously could not do this as i was a  security guard in a shopping centre and the hours long and standing and running around was just so painful. i have started doing little work projects indoors to keep me occupied and also feel as though i am really pushing boundries to complete these and normal day to day requirements.

i dont sleep well at all,my whole body is racked with pain when i try to relax,i wake up to turn in my bed of a night.once awake i cannot settle again due to aches and pains. my legs dont feel like they belong to me anymore,continuous deep ache in bones and a bruised feeling it touched,my arms also dead weights. 

am i trying to do too much? is this normal?

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  • Posted

    Hi Lyn,

    How did your CFS begin ? I've had it best part of 8 months after what started out as a virus. I think it is important to keep as active as one can, how good can it be for us to lie in bed, all day everyday ? It can't. I was prior to me CFS a triathlete. Now 34 seeing older folk have more energy than me is frustrating.

    Thanks and speak soon

     

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    • Posted

      mine started through a virus aswell, im 55  and this really isnt how i am anymore, i used to be so active and always socializing,now i have no energy what so ever,it is so frustrating dont you think?
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    • Posted

      Hi Lyn,

      Yes, especially frustrating when people start to tell you 'snap out of it' 'it's all in your head' etc and the GP is also prescribing anti-depressants which i a refuse. I've felt something good happens when i take cat's claw extract, you might want to try some. Does seems to give me a boost. I usually take about 20-30drops/day.

      Emis Moderator comment: I have removed the product name as we do not allow repeated posting of product names in the forums. If users wish to exchange details please use the Private Message service .

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    • Posted

      Yes, very frustrating. I did 3 months acupuncture and herbal remedy to no effect, cost me close to £1500.

      My other reply is waiting to be moderated. You can't seem to tell people about products. There has been some things have helped me.

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    • Posted

      my gp seems to think its in my head and percribed anti depressants,trouble is im frustrated with it all and i have bad days physically not mentally
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  • Posted

    Hi Lyn, I have had CFS for many, many years. Here is what has helped me... and I've tried most everything. I do not have pain as you describe it, though. Could be that you have Fibromyalgia as the inclusion of pain usually comes with that. Here goes and everyone is different:

    1) diet is critical: eat well - lots of greens, fiber, protein. Drastically reduce carbs. Forget processed foods, processed sugar. If you can afford organic, that'd be a big help. You MUST keep eating salt, though. 

    2) Take a walk everyday, period. I don't care how tired you are. 

    3) Supplements - and I take lots - but these are critical: high doses of D3 in drop form, Ribose-D in powdered form 2 X daily, Vitamin C, Magnisium at night. 

    4) Check hormones from someone who knows what they're doing - not just any doc. Thyroid can often go south, particulary. Progesterone, hydrocortisol, etc should be tested through a saliva test - nothing else. 

    5) Attitude: yep, it's important. Keep a journal of things you are thankful for, have hope, learn to meditate if only to keep your head clear, stay away from toxic people and toxic situations. Not kidding - this can be pretty key.

    6) Melatonin at night (start with 2.5 and work your way up from there) so that you can sleep. 

    7) Try to remain positive. Try to have hope. Try to laugh. (I'm not trying to sound like a hippie here. When you are laughing, your body laughs with you. It's a very healing thing.)

    8) Keep pursuing health and what works for you no matter how tempted you are to give up. 

    9) I have recently started taking Ritalin and this has helped tremendously. 

    10) I find that after periods of virus (a cold, flu, whatever), things will be worse. Be prepared. 

    Hope this helps. I wish you every bit of success. 

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    • Posted

      Hi Marchel,

      I'm interested to know how you go with ritalin and what is the dose ?

      Are you aware of the synergy trial ?

      Also how did your CFS begin ?

      Thanks

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    • Posted

      Hey David, I had a breast replacement on one side and the silicone leaked. From that moment forward, I've had horrible CFS, created through silicone posioning. All hormones nearly shut down, though the Pituitary gland is in tact and functioning. Many other things. Mostly, autoimmune issues. I believe I am not able to join the synergy study as I now live in Europe. Titelbaum's work and other CFS docs led me to the idea of Ritalin, which though designed for ADD (etc), is also used off label for Narcolepsy and CFS (if the conditions are appropriate). I'm 5' 4" and average weight. I started with 10 mg in the morning and 5 mg in the afternoon. I have very cautiously and slowly been ratching up to find the dosage that is right for me. For the last month or so I have been taking 20 mg in the morning and 10 mg in the afternoon. I am now considering increasin the afternoon dosage to 20 mg (with the guidance of my doctor, of course). I have always leaned towards natural and more holistic methods to manage what I can only describe as this crippling CFS, but I finally decided to give Ritalin a try, 'cause God knows, I've tried everything else. I would tell you, actually, that the Ritalin is the difference between living life and managing life. It's been enormous. I'm seriously thankful. (I would also add that I also go to a Bioresonance clinic to try an reduce the hit of the side effects that so many pharaceuticals carry with them, many of which show up long term.) Hope that helps. 
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    • Posted

      Hi Marchel, thank you so much for the reply. I've been determined to have a recovery going down the holistic route but so far nothing much to note. My activity levels have been in decline each month since my illness began. Wondering when it's going to level out, for months i fought the fatigue probably to my detriment long term. Such a shock as i was a semi professional athlete. Now my days are spent housebound, i am lucky i can get out and walk for 40mins and even a little jog for 20metres but considering my past life, bit of a change. The Synergy study, you can mirror the study they are doing, they emailed me about this as i live in the UK. If the results are really positive when they are released January and i am not improving to any degree i will definetely give the ritalina a try. I'm concerned as it is a stimulant it might work like coffee with short term gains in energy but longer term the effect might ware off ? I'd take the ritalin with some good adaotogenic herbs, cordyceps, reishi, eleuthero. Take care. Did bioresonance provide any benefits ? I was thinking about it.
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    • Posted

      I see it all like a vase. The more issues I have, the higher the water level in the vase and the worse I feel, until ultimately everything spills over and I'm in real trouble. So, what I try to do is remove everything from the vase that might edge the water line up. Bioresonance was helpful in that it got rid of some of the other things that would make anyone tired: hiding viruses, heavy metals, restless leg syndrome and candida. It also works to remove the harmful side effects of some of the chemicals in the compound of ritalin. I'm quite pro, actually. If I'm going to stay on Ritalin, then I have to be able to manage some of the other chemicals in the drug to remove chance of further issues (like Parkinsons). Some people talk of a tolerance build up with Ritalin, but my doc says that this is reported because it take literally months of slowly increasing before one finds their dosage... thereby appearing like "tolerance". I don't yet have the answer to this, but I can tell you, I'm willing to take this ride for as long as I can, as it's the only time I have felt even semi-normal in my adult life. I hope you have had your Vitamin D level checked. An enormous percentage of people living in Germany have way too low levels. This will make one quite tired and like I said, I'm looking at the all the water in that vase. My doc says she's hugely impressed with a book she read called something like High Dosages of Vit D. (I'm sorry I'm translating from the German, so don't have the exact title.) That's her next step. Apparantly, the author of the book has had huge success with treating and curing illness with large doses of Vitamin D. Also, have you read Dr. Titelbaum's book? It's fantastic. He's even got a great lecture on curing CFS (from which he suffered) on Youtube - given at a conference for other docs. I believe healing patients with CFS is the only thing he's done for 3 decades. Good luck. Keep me posted.

      I need to take my second Ritalin now and then get ready for friends coming over for dinner. I'm making seared tuna with mango salsa, ginger Belgian waffles for dessert. I will have a couple glasses of white wine. I am only mentioning this, as this is something I could never have done before Ritalin. It's been the difference between living and not really.

       

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    • Posted

      yeah Marchel, i know, every CFS'er knows that too well, the difference between living and not really, or as i say existing. Please do stay in touch.

      My vit.d levels were good at 137, high end. That's the thing with CFS, all my tests whether for vitamin/minerals, thyroid, kidney,liver all come back normal. But our bodies never lie to us, and we know we are far from normal. Take care and have a great night !

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    • Posted

      Thanks for the articles.

      About ritalin, what effects do you experience, did it take long for it to benefit you ? Also what are youlike without versus with.

       

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    • Posted

      Hi David, I don't experience really much of any effect, other than more energy. I am a little more thirsty, maybe a bit less appetite. What I'm concerned about is the longterm effects of the drug, which is why I go to the bioresonance person, to try an minimize those. The effects of Ritalin are pretty much immediate and each pill lasts about 6 hours or so. I take one pill at 9:00, one at 3:00. Without it, well... it's very, very challenging. It's kind of like living life everyday as if woken up at 3:30 in the morning and feeling like that moment for the rest of the day. I will add, though, that I have many deep aches in bones, joints and muscles, but I do not have the kind of pain that many people report. 
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    • Posted

      Hey Marcel, very greatful for that reply. The synergy study say the nutrient blend they use minimises any side effects of ritalin. I can understand the as if woken up at 3.30am feeling but it lasts all day. Wishing you continued health and healing !
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