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Tammy

Combatting Fatigue

26 posts in this topic

I have been fighting fatigue for several months now, lately it has gotten very bad! It is all that I can do to drag myself out of bed for work in the mornings and the weekends I sleep until 11 or 12 and have to force myself to get up! I changed my primary care physician last week, I decided that I needed a dr that was going to be able to help me keep all this stuff together and in perspective (I also have that much needed appt. with the endocrinologist thanks to the new dr.). I asked her about the constant tiredness, she wants me to ask the endo doctor about it but she suggested that I take a B complex vitamin in the meantime. I have been taking it for just over a week now but haven't noticed a difference, maybe I just haven't given it enough time yet but I am so exhausted all the time that I am growing desperate. What have any of you tried and what works for you? I would really appreciate any advice!!!

 

Thanks ~~Tammy~~

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Sorry to hear you are feelin so bad at the moment Tammy, I know what you mean about being tired all the time. Do you think it is time that you had a break from work if at all possible to try & recharge your batteries a little.

I'm not working at the moment & know that I would not cope with full time teaching at present, it's one of those jobs where you cannot do anything other than give it 100%.

 

I have to admit to giving in to short naps during the day when feeling really tired & other than trying to have a healthy balanced diet I don't know what elese to do .

 

Take care

 

Jensue

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Hey Tammie,

I know fatigue can be rough. When I was working I'd fall asleep at my desk without knowing it even though I'd gotten 12-14 hours of sleep the night before. Have you looked into FMLA? It allows you to take time off intermittently to care for yourself. Recharging, like Jensue said might be a good idea.

 

Light exercise may help with fatigue. Also, I've been getting B-vit complex shots every two weeks and now every month. My rheumatologist said it was alright since the body disposes of any thing extra. My last shot got me out of some really, really bad fatigue. My muscles were so exhausted. It felt like I had exerted every muscle in my body without doing anything. The day after the shot I was buzzing around... buzz buzz buzz

 

Take it easy,

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Hi Tammy, you have my sympathy, I know the feeling well. As well as being very debilitating it is very frustrating not being able to do the things you want/need to do and not helped by the fact that to other people you look fine when in fact you feel like death warmed up. What I have found is that if I can break through the fatigue barrier and go for walk or do some other activity I feel better - although its sometimes too exahusting to contemplate. Other than that my only advice is to check the side effects of medications to see if they cause fatigue, don't do unecessary stuff round the house, get someone else to do the grocery shopping or shop online and get it delivered and nap when you can.

Lizzie

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I too understand how you're feeling. I'm coping with the same issues myself! We changed drugs in hopes that those side effects would lessen the effects, but it really didn't help. I never found much help with vitamins when I was taking them, but now might be a good time to re-try - thanks for the reminder! I have used very low dose amphtetamines - litterally 1/4 of the lowest recommended dose - and it does help, except when it stops working, then I am extremly fatigued and have to just sit. It's a 50/50 proposition. I can say that it's good to be able to work & concentrate, but the down side is pretty miserable when it wears off. But, it may be worth a try for you. I work at Starbucks and really love working & the customers who have given me new life. This week I'll see a new rheumatologist and see what he thinks. My general practitioner wants me to start Embrel or Cellcept. He says that this type of drug can give you your life back, but it's a big committment & expensive. But I'm willing to investigate any avenue that's offered. I'll let you know what happens. Remember to take a few minutes during the day to just sit, maybe by a sunny window and just let your mind wander. Amazing how much help that can be too!


Soft hugs your way,

 

Michele

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Fatique is one of my main things that doesn't ever go away...

 

I use to take folic acid but really didn't know a difference, I know when I am more tired than usual, I have an infection. If I am tired I take my nap. Wake up when I wake up.


Sam

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Hi Tammy,

This is a good post, but I'm sorry you're struggling with fatigue. When a person has to work, it's difficult trying to find the time to rest when it's needed. I'm struggling with the fatigue too, but I'm not working anymore... outside the home, that is. I just don't have the physical ability to be able to do that any longer.

Though I'm only taking B12 right now, I find it doesn't help me nearly as well as does the B50. Like you, I require alot of sleep, even though my hubby teases me about it. Only 5 months ago, I was working with him, which required that I be up at 5 am. Thankfully, we went to 3-day weeks 5 years ago, so that helped. However, even with the cutting back on days, I had trouble with the schedule. When pushing myself to do things, I've also found that that takes so much energy too.

I really appreciate this post, in that I've been having extreme pain in my muscles too, so I need to look to resolve this.

 

I hope you can find a solution for your fatigue, as well as others who are having trouble with it.

 

Big Hugs, Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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tammy, I too, know exactly how you feel! It's so frustrating. I am not teaching full time either and some days wish I could and others, I think "wow, no way can I do this any more"...I'm substituting and glad to be able to walk away at the end of the day, although we are suffering financially.

 

What I want to know is WHY are we all so tired? It's almost like a curtain comes down on me and BOOM, I'm done! Some evenings, I fall asleep watching tv with the family, then I can wake up and function again after a little nap. I have a real issue with vitamins because I don't have a colon. Any suggestions?

karen

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Hi Tammy, You have my sympathy. I would say that this is my worst problem lately. I don't work outside of the home and when I do something in the house I find I have to take frequent breaks. I can't vacuum one whole floor anymore without resting halfway through. When I was raking leaves for about 5 minutes the other day I got so tired that I went in and lay down on the recliner. I went dead out to sleep for about half an hour. This is not normal and I don't know the answer. Some days I think, I could go back to work and other days I know that I can't. I've found that I have to rest when my body asks for it or I'm no good for anything.

Hugs, Piper

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Tammy,

 

I can relate. Taking B vitamins does in fact help, stick with them. Are you on plaquenil? That made a world of difference for me. Also taking Fish Oil helps as well, in addition to a good multi-vit. How is your diet? Increased protein can really help too.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Tammy I also have the same problem. I had to retire from my job. I find the only thing that helps is just plain SLEEP and lots of it.

Good luck, Gizelle

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hi tammy. i agree with sweet (hey sweet)...plaquenil saved me. when I'm tired, i lie down and put my feet up...higher than the level of my heart. when I'm having good days, i try to get moving in some way to strengthen my muscles. i stretch...a lot. i've done yoga for about ten years or so and it gives me so much more strength and flexibility.

 

hang in there and respect your body when it speaks to you. when you're tired, please rest.

 

hugs to you and chin up!!!

sharon

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Hi Tammy ,

 

I just commented to Nan on another post about Gareth's fatigue. The Plaquenil seems to be doing so well for the vocal cords, lungs, esophagus..... but the fatigue just will not let up. He came home from school and was so excited about watching the Steelers tonight on TV and, yet, he couldn't even stay wake for the Nightly News to finish at 7:00. He's in bed by 7:00 nightly and sleeps till 6:30 am.....a 19 years old teenager!!! Some social life!!! I sure wish there was some medication to give for fatigue.....there is medication for everything else!!!

 

Take care, Everyone.

Margaret

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Fatigue seems to be one symptom that is consistent with us. It makes you wonder what our bodies are fighting or going through to be so tired. I take vitamins and supplements which seem to help somewhat, but I can lay down at any hour and go to sleep, no problem. Sometimes Im a walking zombie. I have not yet been diagnosed with slero, but have been diagnosed with fibromyalgia and endometriosis.

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I was reading my husband's running magazine and there was an article about foods that fight fatigue... Iron. Lean cuts of beef, dark poultry, clams, oysters, fortified cereals, green peas and broccoli; kidney, black and garbanzo beans. It says that animal sources are the easiest way to meet the recommended 8-11 milligrams/day for men and 18 milligrams/day for women. It also says vit C increases absorption of iron; drinking coffee or tea with meal can block it.

 

Something to think about...

 

I eat very little meat but love beans and lentils and chick peas and chocolate...

but not all together.

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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WOW, what a big issue this seems to be! I really appreciate the good tips and advice. It is interesting to see what has helped and worked for some and done absolutely nothing for others. I talked to my pharmacist today about the absorbtion of the oral B-complex as opposed to the injection form, I know that the injection will provide better absorbtion and be more effective so I think that I my try that. I can handle a couple of days of being sore better than I can the constant fatigue!

 

In reply to some of the posts: Time off of work would be wonderful and my employer does provide FMLA, in fact I already have an intermintent leave but it has nothing to do with this, a whole different dr. and issue there. My job is very stressful, I am the lead pharmacy tech and my boss can barely make it through lunch without me there (lol). If I take much more time off he will probably flip his lid!! The financial impact would cause even more stress at the present time. We are already starting to fall behind just from days off for dr visits and such and there are a lot more to come. As wonderful as it would be, it is just not possible at this time.

 

I am taking several medications now: Papavarine, propranolol, norvasc, omeprazole, furosemide, neurontin, B50, and some prn meds, all but the vitamin and albuterol cause drowsiness (yeah!). If the injection doesn't seem to help I will ask about palquenil.

 

My eating habits are terrible, have been for years, and I know that can cause some of this problem as well. I never eat breakfast and very seldom eat lunch, my stomach problems make it difficult to do so. Lately even dinner is hit and miss, working all day and especially the increased ankle swelling takes it's toll, I am on my feet from 9 am to 6 pm with an hour lunch, by the time I get off I just want to come home, put my feet up and rest. Cereal has been the dinner choice as of late or just skipping it entirely.

 

I am really hoping that the endocrinologist will be able to help with this, it is becoming depressing and I am becoming a hermit. :(

 

Again, thanks for all the replies!!

 

Rest and Hugs to you all!! ~~Tammy~~

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Dearest Tammy,

Don't become a hermit. Hermits don't have internet - we'd miss you.

I should tell you my Vit-B Complex Shots are the most painful of all the labs, injections and IVs I get, but they're completely worth it. I get mine at the natural food store and no, they don't just pop you in the veggie section. It's all quite discreet.

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Tammy it is important to eat well because you will feel more tired without sufficient energy foods. I found myself very much like you not having the energy or time to cook a proper meal so my hubby started cooking for us(I know I'm lucky that way) and since then have been doing more cooking while being off on sick. But it did take a long time before I had built up enough energy to cook.

Can you not eat some fruit during the day to at liest give you some vitimins, & try eating just a little but more often.

 

Do take care of yourself.

 

Jensue

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Tammy,

I don't see how you handle a work schedule/ job like that. I can't imagine standing on my feet all day. No wonder you're fatigued!!!!! Since you do have such rotten, I mean ROTTEN eating habits :) I have a suggestion. How about one of those OTC dietary supplements that come in powder or liquid form? I've started using a powder that has 25% RDA of vitamins per serving. I mix it with some soy milk in the morning and again in the afternoon. It has helped me a lot! I still eat the same so this is what I'm using as my vitamins. I get the jitters when I take a multivitamin in pill form. You can also buy it premixed so all you have to do is drink it, no prep needed.

 

I sure hope you find something Darlin'. With your health and work schedule, you need something.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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hi again tammy. i just saw the meds you take. i know from experience that propranolol can contribute to a whopping amount of "all-over" fatigue. when I was on it I could barely get off the couch. and this was years ago before I had any of this other stuff. i had to switch to atenolol which acts only on the heart. a significant improvement.

 

also, the furosemide...are you taking a potassium supplement? and the neurontin can kick you off your feet too. just thought I'd mention all this, if you didn't already know.

 

take good care!!

sharon

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Hi Tammy and all who have posted since I last did.

Lots of great suggestions for all of us who are having the issues described.

 

I sure like what Janey has suggested that works for her. I'm going to try that too, Janey :rolleyes:

 

I don't know how you do it, being on your feet... a grueling schedule for most, but explains alot!

 

You are a real trooper, Tammy... is there any way you could sit during part of your work day? I realize the demand there must be on all of you working in the pharmacy.

 

I agree with the suggestion by Jensue, Janey and others who suggested you try eating a little bit several times a day. It's so much easier on the digestion.

(I should practice the same :P )

 

Take care, Tammy et al!

Special Hugs, Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Boy can I relate. I have just spent the entire day on the couch having accomplished nothing but had no choice. I have in the last 3 days fallen asleep while I was talking with people - talk about embarrassing! I have decided I can't fight it though - which is the hardest thing for me to do as I am usually such a work horse and a pefectionist on top of it.

 

Everything I'm reading though tells me that it's the sclero disease. What I want to know is this the way it's going to be? I can't imagine having this disease for these poor people that have small children. My husband has been very good in realizing that I can't do much and doesn't require big meals and is OK with cereal and toast if necessary.

 

So you and I just need to realize that we have to rest when our body is telling us that's what it needs and cherish the times when we feel good.

 

Stay warm!

 

Peggy

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I wanted to wait a while before I posted another reply to this topic because I have started a B-complex injection and wanted to give it a bit to see if it helped. I have been using 2cc IM weekly for just over a month now and am still taking an oral B50 complex daily...I am still exhausted!! How often do you guys use the injection?

 

 

Thanks & Hugs

Tammy

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I sometimes feel like I'm drugged, I drop off so easily, while watching TV, reading, sometimes while driving I have to pull over. I started taking a sublingual B-12 and it's helped a bit.

 

Another scary thought, but everyone should keep it in mind is coronary artery disease. For women especially, one of the first symptoms of a blockage is severe tiredness. The month before my first heart attack, I slept like crazy. It happened again and again. (I've had three and the doctors think my arteries are compromised in part because of the scleroderma) My cholesterol is low, I'm on plavix and aspirin and yet I get blockages. Just be aware is what I'm saying, everyone was shocked that my problem was so serious.

 

Karen

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Hi Tammy,

It is not uncommon to have some fatigue with Scleroderma. I did mention to primary physicians during the last visit. He went over all the blood tests to find any deficiencies and he found very low level of iron. He asked me to start over the counter iron tables over 300mg a day and in case I am constipated due to iron, he prescribed medications to relieve constipation. I am glad other necessary elements such as B12, Folic acid are within normal range. Still my CBC stays below 3.5. So I have some more work to do.


Kind regards,

 

Kamlesh

 

 

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