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Mealmaker
Regular Member


Date Joined Jan 2012
Total Posts : 78
   Posted 1/1/2012 2:56 AM (GMT -7)   
Hello All,
 
I'm new here and it took me a while to find a chat/forum group for CFS and Fibromyalgia.  I used to occasionally join a USA chat grp and found great support there.  Anyways, I need some help as I'm starting to panic and the reason I'm panicking is because I'm currently on work placement (like work experience) which is the final component of my Social Work degree however I'm having a major flare over the Xmas break and fearful I won't be able to return to work to complete the final 10 weeks.  I have just had IBS for the last 5 days which has kept me at home.  With the IBS, I'm extremely tired, my joints are aching, my fingers have swelled and the fibro pain has come back big time.  I had only just started recovering from severe CFS last March and I'm thinking that maybe I've taken on too much too soon.  I would love your thoughts and advice as I'm starting to get quite depressed about this situation.
 
I would also like to wish everyone a pain free and health 2012.  Blessings to you all :-)
 
Cheers  Lou

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 1/2/2012 7:18 PM (GMT -7)   
Hi Lou & welcome to the forum.  As you can see this is not a very active forum. I was going to invite you to go to the Fibro Forum but I see you have found us there. I wish this forum was more active because I would like to talk to others about CFS. 
 
All I can say is to pace yourself, don't take on anything else & don't worry about housework & such.  You need all your energy for the job.  I was unable to stay at work & am now medically disabled & get SSD.  But that doesn't mean you won't be able to work.  I have found that I have to set my priorities & stick to them.  I sit as much as I can & relax.  How is your sleep?  I have found that since I am on tizanidine (a muscle relaxer) & Trazadon for sleep I have more energy during the day.  I sleep 12 hours & am up 12 hours but it is how I have to do it to have any quality of life. 
 
I am so sorry you are having to deal with these flares, they can kick you down & not let you up.  I am between flares but as you know even when not flaring this illness is a pain.  I always tell my Dr. that my best is at about 65% of others but for me it has become feeling good.
 
I take B12 sublingual for energy & it seems to help some also, D3 2000mg, my vit D was low probably do to Fibro. 
 
I sure hope you can continue to work & have a satisfying career.  Keep me posted on this.  Many gentle hugs, Denise 
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

frustratedhope
New Member


Date Joined Jan 2012
Total Posts : 1
   Posted 1/6/2012 10:38 AM (GMT -7)   
Hi Lou, I am new to this forum as well. I have had cfs for around 5 years I think. I read your post and was surprised to see that we are in similar situations, as far as school goes. I am at the end of my counseling degree and am starting my internship in a few days. Fortunately I found one that I can stretch out so I only have to go two days a week. I had to get a flu shot for it, and I think that caused me to crash. I am now 3 days away from my internship and my legs are not working right. I can walk, but I am extremely slow and awkward. The more I walk the slower I get, and I don't know how long I could go before I can't walk at all, or before I get too tired to stand up. Fortunately I don't suffer too much with pain. Just the debilitating fatigue.

I guess I may have to tell my supervisor about my health issues sooner than I thought. How do you deal with making commitments when you aren't sure you can follow through? When I went back to school I was doing really well. I crashed hard about a year ago, and had to cut back to two classes a semester. I am finally getting to the point I can make small commitments, but am really nervous about the internship.

I really hope you are feeling better. I actually panic quite often, but usually can do what I absolutely have to do. I just keep wondering what happens when I can't do it when I have to. I hope that makes sense.

Mealmaker
Regular Member


Date Joined Jan 2012
Total Posts : 78
   Posted 1/6/2012 8:07 PM (GMT -7)   
Thanks heaps Denise and Frustrated hope for replying to my post and for welcoming me :)

Denise: I don't sleep very well and if I'm in general health, it's when i most notice my pain. Recently I was taking Melatonin to help with the sleep and it really improved it - I also used to take a herbal sleep aid. Prior to this it was a cycle of pain killers to help me sleep plus prescribed sleep meds (can't remember the names). And it got to the stage that I still wouldn't sleep after about 6 tabs of the combined pain/sleep meds even though one tablet would knock out the average person. It seems my system had got used to them and they weren't working.

Last March (2011) I was bedridden and couldn't shower without collapsing. A walk down the hall would exhaust me as would getting dressed. I started see a GP who was also a Naturapath and she initially took me off all sugar and dairy in my diet and gave me powdered Magnesium and Melatonin. Over the months, she increased the supplements and I was given Calcium/Vit D supplements, Vit B injections plus a B supplement, a supplement to fix my menstrual cycle, a Zinc supplement (as it was found i had excessive copper in my body) and Fish Oil (more than the average dose).

When I first went off the dairy and sugar and just had the Magnesium supplement, I really improved. I could stay out of bed all day and even attend my hydrotherapy session each week. With the melatonin, my sleep began to improve and my sleep cycle righted itself so I had more energy to slowly get stronger and healthier. I stopped taking many of the prescribed medicines I was given and it was mostly diet and natural supplements that have got me better. I have a belief that the flare is due to going back on sugar and wheat (at work they are always having yummy afternoon teas and it's too hard to resist the lovely food they provide :) The IBS is back again, sleep probs back again, pain back again etc etc I need to start eating healthier again (ie no sugar, dairy or wheat) and see how I go.

Now for the good news, there was a job going at my placement and they weren't happy with the people they interviewed so i was asked to interview yesterday for it and if they like what my referees say, then it looks like I've got the job. The team leader is keen for me to get it however I don't feel qualified enough. I'm also concerned about whether I can commit to it (student placement is one thing, a 6 mths contract is another). I don't know if I'm well enough. I'm really confused about what to do if they offer it to me. Any advice??

Frustrated hope: I very very rarely make commitments as i'm always having to cancel. I have missed so many wonderful events over the last 2 yrs (when at my sickest) and it has been quite depressing and upsetting. The fatigue is the worst thing for me. I think the pain might be RA (yet to be tested) however if I'm busy, I can generally put the pain out of my mind (or the back of it at least). Please see my story above about how I started to get better from the CF - it was really difficult to do but I was at rock bottom and willing to do anything to get better and it worked! I would say to anyone suffering CF to go on the Liver Cleansing diet (my liver was so toxic due to many surgeries and all the medications) and go natural as much as you can (ie supplements) and give up sugar and/or dairy.

I fully understand your frustration of having to drop subjects and try to work as part of your studies when unwell. I decided that although my placement would be stressful, I would try to put the least amount of stress on myself. I'm the type of person that gives 150%, goes above and beyond, worries about whether i'm doing the right thing etc etc and I decided not to do this. I was going to do what I had to do, have confidence that I could do it and not do extra things if it would affect my health. I also told my supervisor and team leader prior to starting of my health issues (whether they took much in I don't know) but they are aware that I suffer CF and Fibro. Until now, I'm lucky to say that the health hasn't been much of an issue however the fatigue is really starting to come back. I would love any advice you can give me re the job offer (see above).

I wish you the very best with your internship, arm yourself with all your self help strategies and take it easy. You will get there :)

Betsey Ross
Veteran Member


Date Joined Mar 2011
Total Posts : 1056
   Posted 1/8/2012 4:56 PM (GMT -7)   
Hello Lou

Welcome to our forum. So sorry you had to seek us out.

I have fibro to, and scheduling work is impossible when flares happen. Pace yourself. I have found that my mornings are better for me than any other part of the day.

Please keep in touch with us. We are a warm, caring bunch of ppl.

Soft Hugs
Betsey
crushed lower knee and vertical fx of tibia/external fixator placed/plates and screws and tried to place big pieces of cartiledge under knee cap/tremendous pain in affected leg continously without improving/allergic to metal in left leg/leg isnt straight/ metal removed in July//then total knee replacement/straighten out leg/more phsyxical therapy/take oxycontin,flexeril,cymbalta,vicadin for BT

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 1/10/2012 1:13 AM (GMT -7)   
Lou,  you seem to be sensitive to medications which is something that those with Fibromyalgia & those with CFS have to deal with.  So, you will probably have to find a natural way to get your sleeping under control.  It is imparative if you want to have any kind of life beyond your illnesses.  How I wish I didn't have CFS, I have always said that I can deal with the pain of Fibro  & CFS, I just can't deal with the fatigue.  I think if the Melatonin helped, you should stay on it, at least it is somewhat better then having to deal with the insomnia all the time.  I took it for quite awhile & it really helped me. I had a lot trouble staying asleep so now I am on meds to sleep.  I think the magnesium is helping you & it has helped alot of people with Fibro.  Most, who use it, also use malic acid.  The combo seems to really help.  Looks like your suppliments are pretty much right on with the D3, B12, Zinc & so on. 
 
I hope you cqn take this job you will be offered.  Just pace yourself & rest when you can.  A lot of people with CFS can work but just have to make sure to pace themselves.  You can't work & have an active social life, for example, just not going to happen.  But maybe you can work.  I say give it a try. 
 
I have not ever noticed a change in how I feel or my energy levels due to what I am eating or not eating other then I found I had a soy allergy which was making very sick.  It could be you do need to monitor your dairy &/or sugar though.  We are all so different in our makeup aren't we? 
 
Keep us posted about the job & let us know how it is going.  I hope you feel better.  Gentle hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

Mealmaker
Regular Member


Date Joined Jan 2012
Total Posts : 78
   Posted 1/11/2012 3:07 AM (GMT -7)   
Hi Denise and Betsey,
 
Betsey, thanks heaps for the welcome - most appreciated.  I've only posted 3 things but the feedback, advice and support i've received has been overwhelming - you are all so kind and generous.
 
Denise,  thank you very much for all of your advice.  I'm like you Denise, I can manage the pain (push through it) however the fatigue was way to difficult to manage.  If I can get out of bed and get moving, I generally have a better day.  I'm finding that whilst I am getting a flare due to working, I feel much better when at work than at home because i'm more aware of the pain etc.
 
By the way, I GOT THE JOB!!!!!!!!!  I spoke to the team I will be working with and they are really supportive and willing to help in any way.  They also seem to think I'm more than capable of doing it so I'm going to trust in their belief of me and not worry so much (I will try to anyway).  Once I'm more familiar with the role I will feel more confident smilewinkgrin The best thing about having the job is that I'll have more money to buy the supplements (oh so expensive) therefore my health will be better!!
 
I wish you both a wonderful week :-) Cheers Lou
Dx Fibromyalgia, CF, Severe TMJ, Osteopenia of lower spine, arthritis of L hip, bursitis of L shoulder and hip, GERD, Perimenopause and query RA. Deleting Dairy and sugar out of my diet was what set me on the road to recovery.

"Behold the turtle who never makes progress unless he sticks his neck out" Unknown
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