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Hi Julsie,

I'm sorry I really don't have any tips for you and don't have fibro myself but would like to send big fortifying hugs winging their way to you....

and of course a large supply of good Belgian chocolate!

Katharine
 

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Dear Julsie, I find the Lupus pains worse than the fibro. although I know some people are the other way round. Sensible exercise helps a bit, also try not to get too tense in your neck and shoulders.
Sorry I am not much help. Hope you and the family have had a good weekend.
x Lola
 

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Hi Julsie

I guess it all depends on how you are affected by it. Is it the pain of fibromyalgia that is worse for you or is it the fatigue or disturbed sleep? I have fibro and my neck and left shoulder area is normally the place that hurts the most. Its pretty much constant pain there that gets worse after I have been sitting at the PC too long or driving for a while. I sometimes use a heatpad that you can buy in the Pharmacy and it does give good relief. I also take painkillers (Solpodol 500mg - generic co-codamol)

My Rheumy recently started me on Lyrica which I find is helping me sleep at night as well.

The other thing I do is make up my own rice bags. I use a nylon stocking and fill it with dried rice and tie it off. Heat this in the microwave for about a minute and place it on the area that is paining. (Make sure the rice doesnt get wet!) You can use them again and again. Much cheaper option than the heatpads. :)

Hope this helps
Joan:rose:
 

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Discussion Starter #5
Joan,
I suspected fibromyalgia after you told me about it a while ago.I get a lot of pain in my neck and shoulders but I've had it so long I think I've got used to it,I just take brufen when the protruding discs in my neck give me trouble.I just seem to feel pain much more intensely than I used to,especially labour!!! anyway,it's the fatigue that really gets me and I feel down lately because my visit to the immunologist was so crushing,no treatment,no hope for respite.All this week I have slept when my daughter has during the day and stayed in bed until 11 today:eek:I feel so lazy!I get bad joint pain in my hands,knees and hips but it usually passes after two or three days.I don't get muscle pain as such,more like tenderness like after you've done a lot of exercise.Sorry for waffling.I feel a bit lost at the moment.Every time I manage to get a skin biopsy booked my skin is clear.I don't know whether to go to St.Thomas's privately or to give up now,and accept it's just fibromyalgia...but I don't mean that lightly if you know what I mean:umm:
Thank you Lola and Katharine for your good wishes,I am waiting expectantly for these choccies!
Julsie
 

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Joandublin;511013 said:
Hi Julsie



The other thing I do is make up my own rice bags. I use a nylon stocking and fill it with dried rice and tie it off. Heat this in the microwave for about a minute and place it on the area that is paining. (Make sure the rice doesnt get wet!) You can use them again and again. Much cheaper option than the heatpads. :)

Hope this helps
Joan:rose:
I'd just add something about any of these "grain" bags (Wheat, rice, etc) - it may not be good to let them get too wet, but definitely don't let them dry out totally either - exploding wheat or rice in the microwave is pretty scary, but worse is when a few grains in the middle of the bag overheat and start smouldering and burning away without you realising until too late. I was told to always sprinkle a few drops of water over these bags every time I put them in the microwave to stop that happening.
 

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Hi.. Im diagnosed with Fibro and SLE.
Never really sure which causes what though. Suffered greatly with fatigue. muscle weakness and joint pain over the last couple of years.
I never really looked into Fibro until recently just thought Lupus was bad enough and Fibro was just a little by product. I now think maybe I have more symptoms of Fibro than Lupus.
Those home made heat pack things sound good. When I was in a really bad flare my daughter bought me the heat pads and the wheat bags (very expensive the one she bought) thats a great idea to make them yourself.
Fibro and Lupus seem to have overlapping symptoms so suppose it is hard to tell what does cause what.
Hope you feel better soon. The only good thing is it does seem to come and go with different degrees of severity. (for me anyway)
Keep taking the tablets eh.
Luv Sal x
 

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Julsie,I would say that it is a very close race, but I think the ever-constant
pain of Fibro would edge out in first place. I have fibro, along with lupus and a whole bunch of stuff. The secret to fibro is sleeping aids, an antidepressant, and a
pain pill that can work as good as you can get. Fibro pain does not go away. I so sorry that you hurt, I send kisses to your boo-boo's.
 

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Julsie

To be honest if I were you I would go to St. Thomas privately if you can afford it. You came away from that appointment with the Immunologist with no treatment plan to manage your fibro :worried: And from what you say your GP is no better.

Lyrica is the only approved drug for Fibromyalgia at the moment though other drugs (such as Amitriptyline) are used off label. These drugs mostly concentrate on aiding sleep but they do help with some of the pain. Coud you badger your GP for some pain medication at the very least while you are going through this period?

To be honest my fibro causes me more discomfort and pain than Lupus. At the moment I have terrible back pain and I cant stay much longer on the PC but I would be lost without taking my pain meds at times like this.

I hope you can get some relief soon but I would really consider that private appointment if its at all possible. You have had no luck with your local specialists:mad:

Luv n stuff
Joan:rose:
 

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Discussion Starter #11
Thanks Joan,
Sorry you are in pain too. I've heard people talk about Cymbalta on this site too giving some relief,or am I getting totally mixed up?is that available in the UK?does it have another name?thanks.To be honest,I have a cupboard full of painkillers from tramadol to ibrufen and diclofenac,all from past various pain crises in different body parts but I feel like I'm giving in if I take them,plus I get bad side effects from some.I avoid it unless it's really bad..I know that's stupid.I know that I am lucky because my severe pain usually lifts after a day or two,
Julsie
 

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No you are right about the Cymbalta Julsie. There are a number of members here who take it. Im pretty sure its available as Cymbalta in the UK (generic duloxetine). You could do a search for the name here and have a look at members experiences.

I hope this eases soon for you

Luv n stuff
Joan:rose:
 

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For me, I've been trying to figure out which pain is which since I have both. After reading this, I think I got it now.

Fibromyalgia is a chronic condition causing pain, stiffness, and tenderness of the muscles, tendons, and joints. Fibromyalgia is also characterized by restless sleep, awakening feeling tired, fatigue, anxiety, depression, and disturbances in bowel function. While fibromyalgia is one of the most common diseases affecting the muscles. The painful tissues involved are not accompanied by tissue inflammation.

With Lupus, inflammation of muscles (myositis) can cause muscle pain and weakness (Myositis = Inflammation of muscle tissue).

Source : medicinenet.com
So if I understand correctly... if there is inflammation it's lupus, if not then it's fibro. The reason it's been bothering me is that inflammation is treated with ice usually to bring down the swelling. I mention this because I thought a hot tub would do wonders with my sore muscles only to find out that they hurt worse afterwards.

So far the only things I've found that help me are pain pills, rest, and Amitriptyline (As Joan mentioned). Oddly, swimming in a cool swimming pool seemed to help me a great deal too. Exercising while keeping the muscles cool may be a very good combination for us.

I hope this made sense :hehe: and hope it helps. :)
 

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Hi Julsie,:there:
I am sorry that you are suffering. All I can say is having both FM and lupus bites;) Cymbalta did not work for me. I personally think muscle relaxants are my saving grace. I also use Icy Hot to treat my neck and shoulders. I use patches that have icy hot like soution. I also use 3 heating pads:blush: Heat is my friend, so I am the opposite of Tom:hehe:

Good Luck and keep us posted!



Becca:)
 

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Just in case it helps anyone to distinguish the pains, if ever you are on a high dose of steroids and lose the lupus symptoms, what you are left with is fibro as steroids do not make fibro better.
Interestingly though steroid withdrawal can make it worse. Sounds a bit odd, but I have read this in lots of reliable places.
x Lola
 

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Discussion Starter #16
hhmm,very interesting.I'm like you Becca in that a hot bath will help my joint pain and leg tenderness.Funny thing is,although I feel pain more,I have a really hot bath,don't know if my thermostat is off,but my husband couldn't stand a bath that hot and I think he has the shower set on cold!
Julsie
 

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I have both Lupus & Fibromyalgia, the pain & fatigue affects me a great deal.
My neck & shoulders are the worst too, but also leg, ankle, hips & wrist pain,
I'm a bag of aches :lol:
I'm seeing a physio at the moment for gentle exercise routines. I've just spent 10 weeks of half hourly pool exercise once a week, I was absolutely shattered when I got home from those, it wasn't the pool it was all the traveling backwards & forwards to the hospital swimming pool.
I take Lyrica twice a day, Amitriptyline at night, that's just been upped to 50mg but it isn't helping me stay in bed, I still get restless nights, I also take Codiene Phosphate for the pain, it dosen't take the pain away completely, my Fibro is very debilitating.

I had my bath removed in favor of a shower a couple of years ago,
what I wouldn't give now for a long soak :(
 

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my treatment plan

Hi, my rhuemy wasn't sure about the fibro but he put me on flexiril 10mg. three times a day to help. He also has me on 400mg. plaq and 200 mg. celebrex (for the arthritis). My GP put me on Lyrica for the fibro. What a difference it has made. I thought I was wasting my money and skipped it for a week. Never do that again. Now I am adding a new pill to the mix. A water pill. For some reason I am retaining fluid. If its not one thing its another. I have to have my blood panels down every three months now to check my liver function, but that just comes with all these wonderful illnesses we have.
Nancy
 

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Hi,

Now that my Lupus is some what under control it is my fibro that causes the most of the pain out of the 2. I do have other DX's that can cause alot of pain but I will just stick to what you are asking about.

The lupus is mostly under control with meds daily. I do however have an occasional flare.

I have only had lupus for 4-5 years. Fibro 18 years.

For the fibro pain the Doctors have tried Amitriptyline (for minimum 5 years) and Cybalta for a few months (which never seemed to help). In addition I was on a Flexerial ( muscle relaxor), pain killers, moist heating pads, moist microwavable pads or the self heating pads that last up to 8 hours and lite exersise.

On good days you will tend to over do it.......big mistake. You will really payfore it.

Additional words of advice. Always get a copy of all blood work, test performed on you and any other documentation that you can get. You might never know when you want to see a new specialist or even change docs.

Best of luck
Elaine
 

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Att: Nancy re: water retention

I just read on a fibromyalgia discussion board that Lyrica causes water retention and can cause majorly quick weight gain. One woman claims it caused her to gain 40 pounds seemingly over night! FYI.


nancyr64;512105 said:
My GP put me on Lyrica for the fibro. What a difference it has made. I thought I was wasting my money and skipped it for a week. Never do that again. Now I am adding a new pill to the mix. A water pill. For some reason I am retaining fluid. Nancy
I too endure both SLE and Fibro. My fibro. is worse than it's ever been and it's going on the second week of total body pain. I'd pray for anyone who endures either and both of these conditions.

Hang in there everyone. One minute at a time.
 
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