Does anyone have lupus and Fibromyalgia?

Just wanted to know if anyone had been diagnosed with both, and if so how are you handling it??? I've been off work for 5 months now and i'm going back next week but I am worried.

I have been diagnosed with both, and it has been difficult to handle. Not only do I have to deal with joint pain from lupus, I am dealing with muscle pain, any time my husband attempt to rub my shoulders I can't stand it. I am taking (Amitriptyline) for the pain but it only helps somewhat.

HI heath,

I do not have a full lupus diagnosis, though I have many symptoms, but have full diagnosis of other autoimmune diseases and Fibro. I am a moderator on the Fibromyalgia site and welcome you to also join there. There is a sub-group 'Fibro and Lupus' with about 7 members, but I have a feeling there are even more!

Terri (tez) has told me that Lupus and Fibromyalgia are very similar.

Hope you have a good Rheumatologist taking care of you, it is your best defense!

Big hugs,

SK

Hello Heath,

I don't have fibro just Lupus and other auroimmune diseases.

You've got alot to attend with there and seeing your rheumo he'll need to get you on the right meds for helping both...as Lupus, fibro and Lyme Disease all being A1 Diseases, which usually have other autoimmune diseases follow with them can sometimes become more complicated.

Here's a discussion i did on all 3 being the same and there's also a link about all 3 Diseases on the discussion which will also help.

http://www.lifewithlupus.org/forum/topics/three-diseases-which-carr...

To know what fibro is about i do suggest you joining the fibro site as well which Susan (SK) mentioned....as more knowledge on both diseases will help you alot besides being treated.

www.livingwithfibro.org

Hugs Terri xxx

Heath

I have both and it is a challenge to deal with them both! It is have to figure out which one is causing what! I take pain meds and steroids when I am really bad. I was put on disability in June of this year, but I haven’t worked since February of this year. I just could not handle working and my body was giving me fits! So my rheumy said no more!

I wish you the best of luck going back to work! Don’t be worried because that will just cause more stress for you. Face it head on and see what happens! If you can deal with it then talk to the rheumy about the difficulties and she what they have to say. Make a list of the challages and present it to your rheumy!

Deenie

Hi Deenie,

Well said mate about facing it head on because that's all any of we can do with what's dealt we in life.

Love Terri :) xxx

You have a lot on your plate, but as Deenie said..."Face it and see what happens." Go back to work with a positive attitude and take one day at a time. Don't worry about things that may never happen. Keep a simple diary of your work and the challenges you face because of your illnesses.

Let your employers see the effort you are putting forth. At the same time, don't hurt yourself. I can only imagine what I would feel like if I were in your shoes. I managed to hold on until retirement because I was given a position that allowed me to sit down instead of standing most of the day.... but I don't recommend that for everyone. It is an individual decision. Your doctor will be your best resource and he/she will have records of your illness getting worse.

Trying goes a long way.

Praying for you... for strength, endurance, and wisdom.

Faye

Hello Heath,

How are you feeling in yourself now since adding your discussion and i hope what members have told you helps...please update we when possible.

Hugs Terri xxx

I have been diagnosed with Fibromyalgia and 'Probable' Lupus. I take Plaquenil, Wellbutrin, Neurontin, Clonazepam and pain meds. It is difficult, and with 2 young children to care for, I'm struggling. I would say that you have to find the right balance of rest and exercise, and to journal your symptoms. It's hard to know which condition is causing your symptoms.

Take breaks during your work day. Do breathing and meditation exercises so you learn how to handle stress. One of my doctors told me I need to get oxygen, so go outside every day and do a Tai Chi type of walk with deep breathing. It looks silly but I don't care.

Best wishes for your return to work.

Nicole

Hi,

I also want to mention a new medication that I'm trying for fatigue. It's called 'Nuvigil', and it's a stimulant, which could be handy when you need to be productive at work. I've only tried it a few times, and I split the pill into a quarter or 1/2. You could ask your doctor. Otherwise some of the other Fibro meds work well, like Cymbalta, if you can handle the side effects. I got headaches on it, but it did make me feel a lot better emotionally and even physically to some degree.

So yeah, that's another way I handle it-by taking medication, and trying different things because I haven't quite got it right yet!

Hello Nicole,

Your on a right cocktail there mate but your input is great in helping Heath.

Hugs Terri :)

I’ve been diagnosed with both too. It’s hard to find the right “cocktail” that works for you. I’m on Lyrica and it seems to work for me for my fibro. We have to deal with muscle & joint pain. I’ve been on disability for 3 years now and miss working every day. Try to stay stress free as much as possible. I know sometimes that can be hard. Good luck!

Thanks Reniac,

Especially about the stress because it makes all the symptoms alot worse than they are. :) xxx

Reniac said:

I've been diagnosed with both too. It's hard to find the right "cocktail" that works for you. I'm on Lyrica and it seems to work for me for my fibro. We have to deal with muscle & joint pain. I've been on disability for 3 years now and miss working every day. Try to stay stress free as much as possible. I know sometimes that can be hard. Good luck!

I have Lupus, Fibro and Behcet's Disease...so I know what you're going through. You can talk to me any time you need an ear ;-)

Hello dayzeerock,

Sorry to here you have Behcet's disease also, as that one serious illness alone without Lupus and fibro ontop.

Hugs Terri :) xxx

dayzeerock said:

I have Lupus, Fibro and Behcet's Disease...so I know what you're going through. You can talk to me any time you need an ear ;-)

Hi everyone-sorry it took so long to write back..I've been dealing with a lot. I appreciate all your feedback and I will definitely visit the fibro site also! I've been taking cymbalta and clonazepam on top of my lupus meds. I feel better but still chronically tired. I tried to go back to work on a restricted schedule but they wont let me so I am going to be off another month. My disability carrier wont pay me either. They've denied my claim twice now. I have never been so depressed...

Hello heath,

Lovely to hear off you and know your ok otherwise.

heath the tiedness is always a big major issue for we all and we're lucky if we get odd days but when we do we take advantage of it and especially if your minds built up with it.

I am sorry about your work not allowing a restricted schedule besides the disability part keep rejecting you.

Rest well and i hope the months break helps your body in a large way :)

I have Fibro,SLE and AIH. Three years ago I hadn’t even heard of these illnesses. I do know now that it is unfortunately common to get secondary illnesses. I take Elavil,Flexeril for my Fibromyalgia. It seems to work pretty good. I did have to increase my dose though, since my body got used to the original dose. I wish you all the best. I have heard getting an attorney to appeal the disability is a good idea. You can find one that won’t charge unless you win. I am in that process now. I agree with the above. Low stress and rest is key.

Hello Jusme,

When we get several diseases together they're called overlapping and the more issues that arise the more complcated it can become sometimes, it's about learning your body.

Regarding disability i hope you get it as there's been members on here fighting for as long as 3yrs to get it, so BEST OF LUCK. :)

I have 'Probable Lupus' and FM. I have 2 young children and a baby and find it impossible. My husband has been off work for 8 mths to look after me and the children. I can't stay awake for more than 2 hrs and sleep about 16 - 18 hrs a day. I can't pick up the baby as I have no strength. Can't walk to the end of my road......it's a living nightmare.

GOOD LUCK WITH WORK AND REMEMBER TO PACE YOURSELF!

Ellie