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Hi, my name is Gill. I have had lupus sle for about 7 years, I also have fibromyalgia. I don't know anybody else who has lupus so thought it would be good to talk to others who have lupus. Most of the time I cope well with having lupus but find the fatigue and pain quite difficult. I have two daughters, a cat, 2 guinea pigs and a tortoise. I work as a learning support assistant with special needs children. :)
 

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Hi Gill and :welcome: to the forum,

This is a great place to come where people understand the daily trials and tribulations of living with lupus. I think that even if we cope pretty well on a daily basis the opportunity to talk to others who understand is irreplaceable :hehe: It also gives our loved ones a break from something that they often don't fully understand!

I hope you find the site as supportive and informative as I have,
bye for now,
Katharine
 

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Hi Gill,

Welcome to the Lupus Site. I live on the other side of the world from you, on the west coast of the USA. I have lupus overlap with Scleroderma, RA and Fibromyalgia. The fatigue and pain are hard for me too. I had to stop working because of the pain being so bad. It is mostly manageable with all my medications and as long as I pace myself with plenty of rest.

Are you a single parent? Raising children is stressfull enough even when it is good stress. I also honor you for the kind of work you do. I would never have the patience to do that kind of work and my hat is off to all of you who do. My son has adhd and has had his share of resource teachers (the name we give them in my area) and their assistants.

What medications do you take? Do you have pain meds for the bad days?

Take care,
Karen
 

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Hi Gill:)

Welcome to the Site. I also have Lupus and Fibromyalgia. I find the fatigue and pain my biggest problem. Painkillers help with the pain but the fatigue is harder to control.

Your job sounds like a rewarding and demanding one. Is it full time?

I hope you enjoy the site and I know you will make many new friends here:)

Looking forward to getting to know you

Take care for now
Joan:rose:
 

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Hi Karen,
It is good to hear from you and others who have welcomed me to the website. How does lupus overlap with Scleroderma affect you? I have just had a test for oesophagul function as I suffer quite severely from acid reflux and the doctor said I have Crest Syndrome, as I have oesophagul dysmotility and Raynauds but my lupus consultant who I saw last week said that he didn't think I do have Crest. I am a bit confused.
Yes I am a single parent, my daughters are 12 and 18 years old. They help me out quite a lot with jobs around the house but I find working and running a home exhausting. My job is very physical, involving manual handling as the pupils I care for are in wheelchairs and totally dependent on our care. It can be very stressful too.
At the moment I am taking 15mg Prednisolone amongst other meds to control symptoms such as migraine and acid reflux and I take two 400mg Ibuprofen tablets usually twice a day for pain. I tried pain patches but was really sick. I am quite limited in the medication I can take as I am lactose intolerant, I don't know whether it is the same in the US but over here the vast majority of medication has lactose in it, it causes me real problems trying to find an alternative that I can take.
What medications do you take?
Take care
Gill X
 

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Hi Joan,
Thanks for replying, its so good to hear from others with lupus and fibromyalgia. I find the fatigue hard to cope with too because like you say medication helps with pain but there doesn't seem to be an answer to the fatigue. When I started my current job I was full time but found I couldn't cope so have cut down to 4 days per week. That is a bit too much for me too really, but my options to cut down further are limited being a single parent. I tend to save my energy for work and then rest when I am not at work, so my social life is pretty non-existent! Do you take any medication for Fibromyalgia? I have tried a few things but they didn't make a big difference.
Take care
Gill X
 

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Hi again Gill

Your situation almost mirrors my own! I have always worked full time but about 18 months ago I cut down to 4 days per week. Im the Director of a womens drug rehabiltation project. I too am a single parent but my daugher is grown up now. However I do foster a little boy. He's eight years old and have pretty much had him all his life.

I did try Amitriptyline but I had to come off it. It seemed to have quite the opposite effect on me than its meant to have, i.e. I couldnt sleep for 7/8 hours after taking it and then I would keep waking up when I did sleep. I stopped it after a month of persevering. I havent tried any other medications specifically for fibro. I manage with a combination of rest, painkillers and heat pads. I bought some pain relieving heat pads in our local chemist. They are a bit expensive but they last up to eight hours and the heat from them really helps ease the pain in the worst places. I spare them out because of the cost.

I also use a home made device which is simply get a nylon stocking or cut off one of the legs from a pair of tights. Fill it with dried rice and tie it off. Stick in the microwave for about one or two minutes (you will get used to how hot you need it, etc). Because they are so pliable they can be useful for around the neck area. The drawback is that the heat doesnt last long enough though - maybe 20 mins or thereabouts. I have several different sizes handy. I call them my pet ferrets :hehe: Be careful not to let them get wet though as the rice will start to cook inside them. They last for absolutely ages. I also sometimes use Difene Gel which the rheumy prescribed for me.

Sleep is very important if you have fibro. I use a product called Kalms Sleep. They come in tablet form and you can buy them in the Pharmacy and they dont interact with any of the medications I'm on. I take four a night and it has helped my sleep greatly. Before this I would keep waking up about at least every hour. I have a few sleeping pills which my doctor prescribed for emergency use. I rarely use them (for example I got a months supply a year ago and still have plenty left). Its good to know they are there if I really need them though:)

Luv n stuff
Joan:rose:
 

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Hi Joan
Thanks for your tips and ideas. I also tried Amitriptyline but it seemed to upset my stomach and bowel and didn't make much difference to the fibro. I use heat bags similar to the ones you describe, I bought them at our local chemist. They are made of material and filled with wheat grains and I put them in the microwave for 2-3 mins, they stay hot for some time. When I bought them they were infused with lavender oil so helped me to sleep too when used at night.
I haven't tried the Kalms sleep tablets, may look into that! I have had Diazepam prescribed for the fibro in the past to help with the muscle spasms and to help me sleep but it was only a short term solution to get me through a bad period. I struggle with getting enough rest.....I am always on the go and find it hard to pace myself. I am a bit of a cleanaholic!! and push myself quite hard with doing the housework etc. I am working on having a more sensible approach, but I tend to push myself more when I am not so well, its like I am frightened to give in to it! Crazy, I know.
Take care
Gill X
 

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Hi Gill

I think its a very normal reaction to try and not 'give in' to it. Its not crazy at all. It can be frightening to think about not being able to do the ordinary, everyday things we once took for granted.

I'm glad you are working on a more sensible approach though as, truthfully, if you push too hard it will only end up being worse for you in the long run. But you probably know that deep down. It is hard trying to get the balance right between taking care of yourself and doing the ordinary things that we all have to do - like making a living for example. I wish you the best of luck in striking that balance but I believe its an ongoing process of learning.

Just dont feel guilty for the times when you have to rest.

Luv n stuff
Joan:rose:
 
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