Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1
  • 2

TOPIC: Just diagnosed with CFS

Just diagnosed with CFS 12 years 5 months ago #1

  • Mere
  • Mere's Avatar
  • OFFLINE
  • EiR Newbie
  • Posts: 1
  • Karma: 0
My Dr. just diagosed me with CFS last month. Here's my history. I'm a 36yo female. Just about 2 years ago I started getting EXHAUSTED. I've always been in fairly good health but have struggled with depression for most of my life. I had never experienced the kind of exhaustion I was experiencing even after giving birth. I was never a napper etc. After feeling like that for a few weeks I went to see my Dr. At the time I had no other symptoms but exhaustion. I was already on anti-depressants. For some reason he wanted to do a mono test to rule it out. It came back positive for mono (epstein bar virus) Well it's been 2 years and I've never fully recovered. We've done a sleep study, stress test, blood work for anemia, thyroid, glucose etc. All normal. I've gained 15lbs and it takes every thing I have to get through my day. I work full time, have 2 small children and a husband. I come home from work and pretty much I'm done for the day. Also I've been sick more in the past 2 years then the past 10, flu, strep a few times, every cold that goes around. The Dr. started me on Provigil to keep me from falling asleep at work and also B12 nasal. It has helped me to get through work but I still have no energy. I've been trying to research but I'm just so tired an overwhelmed and don't know where to begin. My Dr. seems like he's done and I just have to survive like this. What do I do? I want opinions from others who have been through this. Do I really have CFS or could it still be something else. HELP!<br /><br />Post edited by: Mere, at: 2010/04/29 08:31
The administrator has disabled public write access.

 

 

Re:Just diagnosed with CFS 12 years 4 months ago #2

  • michelled
  • michelled's Avatar
  • OFFLINE
  • EiR Newbie
  • Posts: 1
  • Karma: 0
Hi there.
I was diagnosed in 1998. I am 45. I went to my dr with very similar symptoms. I thought originally I had Strep Throat, as it felt like I was swallowing glass. The symptoms eventially subsided, some. I was going through a stressful time. When the symptoms persisted and came back I was tested for Epstine Barr. Ok I am 45 and have Mono? With that I understood that this would take some time to get over and was viral and could reoccur. I resumed my daily routine the best I could, however, shortly after rising I would feel like I already had done a full day. I have always been a A type personally and often doing a lot of things at the same time, yet I could barely finish what I started. I became frustrated. I finally could no longer accept this modified way of life. I too was prescibed Provigil which works, however to get this approved with some insurance companies is a real HASSLE. It has been a point of contentsion and addition of stress which I found to be a trigger. For awhile my symptoms went into remission, returning in 2001 (another stress related event) and off and on since. I went to chiro, acupuncture and massage, physical therapy, you name it, again symptoms subsiding yet coming back. You can feel when the are coming. And then you just tence up because you know it is going to be a long haul, and you were just feeling better. I would love to know what it feels like to be 100% again? Last Jan (09), I was laid off. Since then, I have been attending school, which has been very difficult cognitively as around 2-3pm, I hit a wall, I cannot think, I cannot process any more information. So, without being able to control what time of day classes are offered, I had a difficult time asking for assistance or allowances for my illness based on the lack of understandind of CFS and the negative association of being considered LAZY. I was able to decrease my class load by a class, which was still more than a full time job for me to complete. Somedays I just want to shut off. I am so tired. I cannot sleep at night. I suffer from anxiety about the next day, and the fear of not waking up feeling like I slept at all. I take Ambien to sleep. And I too had issues with weight gain, I would assume related to the stress and sleep deprivation. I started taking Adderall to assist with my cognitive issues for school, and that helps but does not address the same chemical functions as the Provigal, which is still and issue getting approved with insurance, so against my dr's advice I am not taking that med currently. I cannot medicate after the morning, as I do not want to further challenge my sleep. I have constant headaches, which I take pain medication for. I started taking suppliments, including D3, C and Mag/Cal. These have helped. Being unemployed I was able to lay in the sun just about everyday during the summer, which was beneficial (not to my skin) but to my overall depression, allowed me to rest and collect Vit D. I also started to work out, for one hour 3x's a week doing pilates mat class at a local gym. This allowed me to drop 15 lbs over the last year. I found this also helped me with sleep issues, and improved my focus some. However, I regognize this is easier said than done. The littlest things can trigger a negative result. I have been feeling GREAT and then wham, I cleaned the house, worked out and did laundry, now I am down for days...my friends never see me. It is a huge stress to get my daughter to outside activities (she is 15) and she just hates to ask. So now my illness is affecting her. She wonders if it is ok to ask, will it stress me out? When you are constantly tired, it is like poking a bear...Last week I was offered a job, a bit of an apprentice position, which will require A LOT of training FAST. I was offered this because of my past professional experience with the manager, now I cannot sleep. I fear I will disappoint them, not be able to take in all this info, fear of working 40 + hours a week, for LESS than what unemployment pays. How can I do this as a single mother? The experience in this economy out weighs the symptoms? This is the 1st position I have been offered in a year...needless to say, from the day I was offered this job last week, I have been in crisis, not able to function. I am so fearful taking this job is like shooting myself in the foot. I applied for disability last year and never completed the paper work (which was so tedious, and felt like I was defeated before I began) so I was denied. I really feel like CFS is a DISABILITY, yet noboby will ackowledge it. My life has been drastically changed. I want it back! I hate taking a handful of meds and suppliments daily just to get by. I guess my advice to you would be to look at some additional medications. I would enlist husband, family and friends to help and learn more about your illness. Ask for help. Understand it is ok if the beds aren't made. Pre-make dinners in advance and freeze. I know you are used to doing more, but you will have to learn that a lot will not happen and that is ok. Rest when you can and learn to say no when you are feeling ill, it is your body telling you something.
The administrator has disabled public write access.

Re:Just diagnosed with CFS 12 years 2 months ago #3

hi all, Hoping I can help. Have had history of ill health due to G.F. while pregnant 20 yrs. took 4 years to recover. Moved to new state, great for 1 yr then chronic fatigue. Sought the help of Osteopath/naturopath. Got me back on the road in 6 mths, went to school. Starting eating sugar free lollies, (aspartame toxicity) whammo! back to all the symptoms of C.F., but the brain fog was much worse this time. Recognised the toxin, but took around 2 yrs to recover under the care of naturopath. Marriage broke up, went into peri-menopause, was fine with general tiredness until I stopped exercising and took up red wine to try to get to sleep for work (6.00 a.m. starts). Worst thing EVER! Was put on anti-depressants, but Dr wouldn't help with the p.m. symptoms due to sister having breast cancer x 2. Weight ballooned of course, put on 14 kgs, got married again (nuts!) , and had to give up work. The feet were in agony (heel spurs) due to weight gain, depression big time and brain fog. Had moved but went back to Naturopath and she put me on a Magnesium powder mix for pain and energy. Was able to walk around the shopping centre within 3 days. What a relief. It was too expensive to buy from her all the time so went to a health shop owned by naturopath and was able to buy same type of product for much cheaper.

Have been to hell and back with the hormones all over the place. Be warned from my experience. I was taking ginkgo biloba for the brain fog and panax ginseng for energy/adrenals, BUT they have oestrogenic effects, so be careful and research before taking things like this. Ended up with high CA125 reading of 55, due to exceptionally high oestrogen levels. The doctor was worried. I'm convinced the F.M. that has just come on (sister has had it for 10 yrs, who is 10 yrs older than me), is genetic and hormone HPA axis based. I wonder if the fact that we both have HLAb27 gene means anything?
I've been taking Maca powder in the hope that it will balance the hormones thru the HPA axis. The spasms and pains have eased, but still have powerful earache at times with dizziness. MMmmmmmmm? Will be interesting to see.
The administrator has disabled public write access.

Re:Just diagnosed with CFS 12 years 1 month ago #4

  • inkpink
  • inkpink's Avatar
Hi,

Sorry to hear you've been diagnosed with this - well better than no diagnosis at all, but still...

I can't write all there is to say except to say I hope that in your case early diagnosis will make the difference. It can do. I can refer you to a good site www.recoveryfromcfs.org. It's basically a book online, chapter by chapter. The guy is really good & reading that has made all the difference in the world to me. Just a chapter a day - they are so short & easily written. I wish I had that advice at the beginning of my illness & am so grateful for it now.

Meanwhile, rest, try not to stress & be gentle with yourself.
The administrator has disabled public write access.

 

 

Re:Just diagnosed with CFS 11 years 10 months ago #5

  • david
  • david's Avatar
  • OFFLINE
  • EiR Junior
  • Posts: 22
  • Karma: 1
Hello all
I really would recommend that you look at Dr Myhill's website, www.drmyhill.co.uk as she is very knowledgable on many topics and especially CFS and I found this VERY helpful.
Best wishes
:)
The administrator has disabled public write access.

Re:Just diagnosed with CFS 11 years 1 week ago #6

  • Bushi
  • Bushi's Avatar
  • OFFLINE
  • EiR Senior
  • Posts: 46
  • Thank you received: 6
  • Karma: 1
For what it's worth.... I found this artlce called:

30 Top Tips for Treating CFS & Fibromyalgia When All Else Fails (Part 3)

I don't know much about CFS but I thought it may give some of you some additional ideas to add to your lists of things to try.


www.stopagingnow.com/liveinthenow/articl...ll-else-fails-part-3
The administrator has disabled public write access.

 

 

  • Page:
  • 1
  • 2

Please Help Support EiR with a Positive Google Review!

Review www.ei-resource.org on Google

 

If you like EiR and / or enoyed this content; please help us keep going by leaving a Positive Google Review:
https://g.page/r/CbAgn_56aqWaEAI/review 

P.S. This is entirely secure, we collect no data other than what is freely available from Google and you can remain anonymous!

 


Related Articles:

 

Mold Testing & Sanitizer:

 

 

 

 

ADVERTISEMENT

 

Time to create page: 0.292 seconds