Fatigue

[Jeffscott69]

I don't know what I can do for this constant fatigue,can't stand it,hard trying to go to work,try to socialise with pals,2 wines,feel the effect and have to go home,take 200mg hydrochloxychoraide,what can I do,my life completely changed.,take gabapentin for pain,but tiredness unbearable.

[Whathappned]

Hi

Did you talk to someone about increasing your dose of hydroxychloriquine? Just wondered as I was initially on it twice a day. It took a month or so but it made a difference and then it was reduced to 1 daily.

I was still fatigued but able to start working again. I am impressed you are still working, I had to take time off and build up my hours again. I found concentrating hard and coping with stress impossible which made it impossible to work. Do you have understanding employers as it makes a big difference. I was very lucky.

Like you I found alcohol made things worse and I have did cut down (although I can have a bit more now .

You need to take time to let the drugs work and you will need to slow down a bit. Unfortunately compromise is life now, planning and prioritising. Friends try but they just don't get it, and often they say the wrong things without realising. I know what you mean, I'm tired as well !!!

It will get better, it takes some time and they may add in more drugs like methotrexate or azathioprin. It depends on your symptoms.

I have felt so much better, it took a few months but since then I have slowly (2years) progressed to almost normal.

One day I woke up and decided I couldn't go to work as having a shower had meant I needed to go back to bed. Last weekend I cycled (on an electric powered bike) over 20 miles around Kielder reservoir. I have good days although I am suffering from sore joints and stiffness from my cycle ride at the mo but I'm not too fatigued that I haven't managed work. keep positive know you will improve and the drugs have a positive effect.

[Jeffscott69 in reply to Whathappned]

Thankyou for your advice,I'm gona call reumy mon to see if I can increase tabs,what does methroxate do?

[Whathappned in reply to Jeffscott69]

Methotrexate is a chemotherapy drug, originally used for childhood leukaemia in 1975!

It's used in very small doses in Lupus as an immunosuppressant. There are variety of these drugs they can choose from and it depends on what they need to control. Methotrexate seems to have a good effect on joint pains and used a lot for rheumatoid arthritis. It can have an effect on your kidneys so your advised to drink in moderation and definitely not the day you take it.

I take it at night because I found it does increase the fatigue, although short lived.

It has made a definite improvement in my symptoms. My consultant says she finds hydroxy and methotrexate work well together. It took some time to get to where I am. I still get pain and I get tired but I'm in a much better place and you will be, I'm sure. Although it is slow progress, with a lot of change to get used to.

[Jeffscott69 in reply to Whathappned]

Thankyou.

[Hidden]

I've written a lengthy post on fatigue which you'll find helpful I hope - have a quick read

[DD22]

Hi I've compelety changed my diet, stopped eating prosessed foods, dairy & meat...

Since doing this I have so much more energy when Iam well...

A friend of mine bought me a book call the lupus recovery diet, a natural approach to autoimmune disease, by Jill Harrington..

I'm been a vegy for many years so found the transition to a plant based diet quite easy.

I still have tied days & have other things going on, but over all my fatigue is much improved..

[woodlandsongbird in reply to DD22]

I am doing this too .. also maca powder and Spirulina powder in my morning smoothies gives me the energy I need. An amazing change. I will get that book ... Thank you.

[Purpletop]

Increase your hydroxy, you'll see a marked difference. If that doesn't do the trick, speak to your rheumy to do a short trial of an immunosuppressant - the tiredness means your lupus isn't properly controlled.

[zebedee01]

Hiya, I feel the same, I am just so exhausted at the moment! Although it has also been a lot worse than this before. I am managing to work, just. I couldn't at first though, I was too poorly for about 20 months. Now I just battle on through because I had plans when this illness struck me down and I still have these plans in my head, and I am impatient so I think if I can't work then I can't do this. I do feel deep down though that I might not be able to manage my plans and dreams, and that breaks my heart so I try to ignore it.

Anyway, I have gone off on one here haven't I.

Manage the tiredness by sleeping whenever you have chance and don't make too many plans (for example I don't plan more than one thing in one day! If I am working then I don't plan anything else that day. If I am meeting a friend for coffee I won't plan anything else that day etc), this gives you the chance to rest.

Also I was drinking green smoothies for a while and they really helped! I am going to have to start again but I just got sick of them. I used to have spinach or kale, and some bits of fruit, and blend them up and drink it! It really helped and I swore that's what made me well enough to go back to work! Try it xxx

[Jeffscott69 in reply to zebedee01]

Thankyou

[tsizzle]

The fatigue is a bummer. Rest when you need it. I had to give up drinking entirely! Light exercise helps me too. It's a complete lifestyle adjustment isn't it? I hope you feel better xo

[Jeffscott69 in reply to tsizzle]

Fatigue awful,really want to do things and go socialising like I used to,end up having to leave early and feel let my friends down,also I have to work,no option,very difficult,put all my energy into job,come home and need to sleep,yet when I'm awake hardly sit down,but have to give in to the fatigue,can't fight it.

[Terrier_Lady]

I would definitely talk to you doctor about raising your hydro dose. It made a difference for me and also helped me hair to stop falling out. 200mg per day isn't a very high dose according to all the rheumies I've talked too. I know some people say it goes by weight but I'm a pretty small person and my rheumi says my max does can be 600mg. I'm taking 500 right now. But I also wanted to tell you on top of the horrible fatigue that lupus causes your gabapentin might be increasing the symptoms. My dad had struggled for years with kidney issues from a deformed kidney. Now they have finally come up with a surgery he received this year to reconstruct it. But before that they gave him gabapentin to manage the pain from all the nerve damage he had. He said he had build up a tolerance to it. He was on a rather large dose but he said that it made it so hard for him to stay awake. And after a few weeks of steadily being on it, the drowsiness went away. He wasn't sure if he could push thru the tiredness but my uncle who is a pharmacist encouraged him to, telling him his body would get used to it. Are you on a daily dose? I'm surprised this is what you have for pain as it's more of a nerve blocker than a pain management medication. And it really large doses it a seizure med. So if you ever come off it, you have to taper so you don't develop seizures. At least that's how it worked for my father. He is off it now that he is recovering from his

surgery. Does it manage the pain well for you? I go to a pain clinic because as my disease activity had increased my pain level has become pretty unmanageable. My understanding is our pain is caused from our immune system damaging our bodies so we have more than just nerve pain. I have a lot of pain in my joints and from inflammation. Curios if a nerve blocker like gabapentin would be helpful along with my current regime?

[Jeffscott69 in reply to Terrier_Lady]

I feel big difference with gabapentin,not so sore and a body not ache like flu symtoms,I'm defo going to ask to get tabs increased,I can't cope with the fatigue,memory terrible,only 46,it embarrasing at times.

[woodlandsongbird]

Hi, someone recommended maca powder in smoothies which I now take .. I use a blend of spirulina powder & maca powder (1tsp of each) in an apple juice base (alkaline base) with a banana and blend. It really does help with my energy levels. Google both to see if it suits you. Spirulina is packed with iron and B vitamin. Good luck, I wish you well.