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NaturalMystic
11-16-2011, 05:17 AM
Hello all,

I'm not sure if this is in the right thread, but here goes.

Does anyone have both Lupus and Fibromyalgia? What was your experience with getting to a diagnosis?

I'm asking because my doctor put me on prednisone to try and eliminate Lupus. The prednisone helped with my joint pain and swelling when nothing else did, but I still have a lot of muscle pain, an achey/sick feeling, fatigue, headaches, dizziness, stomach pain, insomnia and joint stiffness when I lay or sit in a certain position too long.

I'm just confused. I thought the prednisone would have helped a lot more. I'm worried too about what other tests I'll have to do, what other medications I'll have to try (because I always get sick when I start a new one), and whether or not I'll actually get a diagnosis. My doctor is fantastic and has helped a lot, but that doesn't calm my nerves.

Thank you in advance to whoever responds! I greatly appreciate it!

Blessings, Love & Aloha,
Ty

debbie-b
11-16-2011, 05:32 AM
Hi Ty,

I do have Lupus, Fibro and RA.
Since Lupus and Fibro can cause muscle pain, it is hard to pin point which is which.
When I was on MTX, most of my muscle pain was gone, but the muscle pain from the Fibro stayed.
I am refusing to take Anti Depression drugs, don't ask me why, I just do. Maybe because I know, that I am not depressed.

Debbie

steve.b
11-16-2011, 05:34 AM
you will find many of us are diagnosed with both disorders.

remember we are not doctors, but we can talk about what works for us.

the best person to talk to is your rhuematologist.

for me, what works best is a combination of:
anti inflamitories ( celebrex)
pain killers (panadol osteo)
lubricants (fish oil)
magnesium
and anti depressant (endep)

NaturalMystic
11-16-2011, 05:44 AM
Hi Debbie,

Thank you for responding! And thank you for sharing your experience with MTX. It's helping me understand a lot better. I thought I was going bonkers because I still have pain. I tried to deny it for a few days, but when doing simple things like trying fixing a sandwich feels like a workout, I can't deny I hurt.

I don't blame you for not wanting to take Anti-Depression drugs! I wouldn't want to take them either! I read a lot of other members had a lot of negative effects because of taking them :(

Thank you again!

Blessings, Love & Aloha,
Ty

NaturalMystic
11-16-2011, 05:52 AM
Hi Steve.Bryce!

Thank you for responding!

Wow, really? I haven't been on here long enough to know a lot of people. I saw a thread with one person who has both, but didn't want to send a message to her alone as I wanted to hear from other people as well.

Sorry, I didn't know how to ask my question. I was wondering what everyone's experiences were and what helps them? I've only just started my journey and am a little worried about what's to come. I was surprised to find out a person could have both (?).

I don't have a Rheumatologist yet. I just got medical coverage so now my PCP can refer me to someone. Hopefully he/she is as good as my PCP! :)

Thank you again for responding!

Blessings, Love & Aloha,
Ty

jmail
11-16-2011, 09:15 AM
Hi there NaturalMystic. Don't be too worried about taking anti-depressants. As with most medication, it's a matter of finding the one for you (if one is prescribed), since they all tend to work differently with different persons. It sometimes takes a while to find the dosage that works best also. Most times, it'll be low-dose. My doc prescribes for me at the "normal" level that a person with "classic" depression would get (I can't remember the name of it just now, but it's a form of Wellbutrin...), so that my insurance covers it, then I "cut" the pill into fourths for my doseage. What it does, is "slow" me down a bit, allowing my muscles to relax a bit, taking the strain off the joints - or so it seems. Also, I don't "care" about the pain as much, which is less of a worry. Every little bit helps. It's easier to deal with an anti-depressant for me, than it is to be knocked silly by a muscle relaxer, especially where I work...

NaturalMystic
11-16-2011, 10:11 AM
Hi jmail,

Thank you for responding! I see your point on anti-depressants. I'm currently taking muscle relaxers when needed, but I'm like you - they knock me silly. I can't work or do much of anything when I take them. All I'm good for is for taking a nap. It would be nice to not "care" about the pain as much as I always seem to worry about doing something that could make me feel more pain. Hearing your experience with what you're taking makes me less worried. Thank you :) I'll be a lot more open the next time I see my doctor.

Blessings, Love & Aloha,
Ty

mdawncooper
11-16-2011, 06:06 PM
I am still fairly new with all of this Lupus stuff but I am currently taking meds for Lupus and now my pain management doctor is giving me meds for Fibromyalgia type pain. I am starting to see a difference. It is hard for me to always tell what is going on with me but the one thing I am learning is to ask lots of questions and not feel bad about it. I am pretty exhausted tonight so this may be no help at all but I am really glad to hear from you.

Melanie

chikititalinda
11-17-2011, 11:42 AM
I also have both, Its horrible! Im on Cymbalta for pain and mild depression and gabapantin. Im not sure they are working. Im always in pain and so stiff, especially in the mornings. What do you guys take for fibro pain?

lizbond36
11-17-2011, 01:40 PM
hello
I have both, I had lupus first then Fibro. The cold weather kill's me. I try warm bath and I am getting a warming blanket. This is a wonderful group, I haven't been online in a long time. Not in a great places :-( Good luck and keep us posted.

Liz

NaturalMystic
11-18-2011, 05:34 AM
Hi Melanie,

Thank you for responding! I'm still really new to all of this Lupus stuff too, so don't worry! My doctor has been working on managing my pain, but so far everything he gave me doesn't work. I'm hoping he'll subscribe something new at this next appointment cause the pain has gotten bad enough to want to go to the E.R. I can totally understand feeling exhausted. I'm almost always exhausted... But I'm sure a lot of others are feeling the same.

Thanks again!
Blessings, Love & Aloha,
Ty

NaturalMystic
11-18-2011, 06:20 AM
Hi Liz,

Thank you for responding! And thank you for sharing! The cold weather definitely does a number on me as well. Although I live in warm weather, when I travel for work I sometimes end up in snowy weather or weather close to snowing. I wear multiple layers, take warm baths, and using warming blankets, but none of it helps. Maybe I don't notice the difference cause I'm always in pain. I'm still working with my doctor to get the pain under control, but so far everything he's prescribed me hasn't worked. I'm hoping he'll finally give me something stronger at this next appointment. It's been so difficult trying to get through the day. I know how you feel about not being in a great place. If you ever need to talk, we're all here for you! This is definitely a wonderful group filled with a lot of helpful and supportive people :)

Thank you again!
Blessings, Love & Aloha,
Ty

magistramarla
11-19-2011, 09:36 PM
Aloha Ty,
Welcome to WHL. Many of us have overlapping AI diseases. They tend to come in packs. My rheumy called mine Mixed Connective Tissue disease, since I was mildly positive for Sjogren's, Lupus, RA and Psoriasis. Plaquenil and MTX have done a lot to help my joint pain and skin issues, but I have constantly spasming leg muscles.
My otolaryngologist who treats me for Spasmodic Dysphonia (spasming vocal cords) thinks that the two are related and is trying to get me checked for Spastic Paraplegia.
Like you, I can't handle the muscle relaxants. One Baclofen will make me sleep for 14 hours and give me a hangover the next day. If I'm going to have a hangover, I would rather get it the old-fashioned way - lots more fun!
Good luck with your quest for the right docs and the right meds.
Hugs,
Marla

NaturalMystic
11-23-2011, 03:49 AM
Hi Marla,

Thank you for responding! And thank you for sharing! Very interesting information! I now have a love-hate relationship with muscle relaxers. They definitely help me get some sleep, help with the sometimes painful muscle spasms, but I end up 10x more exhausted and with the same "hangover" feeling you get. I'll literally sit for a few hours debating on whether or not it's worth it to take them. I, like you, would rather have a hangover the fun way. :D

Thank you. I am still on a quest to find the right meds. I'm having a little trouble getting an appointment with my PCP (so he can help me or refer me or both), but it is almost Thanksgiving so I'm guessing their hours are cut due to the holiday.

Blessings, Love & Aloha,
Ty

Desleywr
11-23-2011, 04:09 AM
Aloha Ty,
Welcome to WHL. Many of us have overlapping AI diseases. They tend to come in packs. My rheumy called mine Mixed Connective Tissue disease, since I was mildly positive for Sjogren's, Lupus, RA and Psoriasis. Plaquenil and MTX have done a lot to help my joint pain and skin issues, but I have constantly spasming leg muscles.
My otolaryngologist who treats me for Spasmodic Dysphonia (spasming vocal cords) thinks that the two are related and is trying to get me checked for Spastic Paraplegia.
Like you, I can't handle the muscle relaxants. One Baclofen will make me sleep for 14 hours and give me a hangover the next day. If I'm going to have a hangover, I would rather get it the old-fashioned way - lots more fun!
Good luck with your quest for the right docs and the right meds.
Hugs,
Marla

Hi Marla
I get the leg spasms and I have been put on Madapar which is for Parkensons disease it works and releases the spasam, three times a day. I have been on it for 18 mths.

tabathabroaden
11-23-2011, 06:59 AM
Hi,
I have been diagnosed as having Lupus and Fibro as well. One doctor told me it is impossible to have both, but I am here so it must be possible. I am prescribed a low dose anti-depressant and believe it or not, it helped ease some of the pain to make it tollerable and it helped with my sleeping. The only problem is, when I dont take it, as in I run out of the prescription, I come down hard, I can not sleep, and I have to have a consistant flow of tylenol or motrin at the bedside. Along with plaquenil and nuerontin, this combination has seemed to work out well for me. Has this cocktail ever been suggested for you?

NaturalMystic
11-23-2011, 07:56 AM
Hi tabathabroaden,

Thank you for responding! And thank you for sharing! I never knew it was possible to have both Lupus and Fibro (or a mix of multiple illnesses) until I joined this site.

My doctor prescribed a bunch of different pain meds thinking it was Arthritis. Of course none of that helped for longer than a day or two. He did a bunch of blood tests that all came back clear except for my ANA, which was about 180. He gave me prednisone for 2 weeks to see if that would help. It made a difference in regards to the joint pain, stiffness and swelling during the first week, but this last week has been horrible. The joint pain, stiffness and swelling almost all came back. The muscle pain never went away, I've been 10x more exhausted no matter how much sleep I get, I've had way more muscle spasms, headaches/migraines, dizzy spells, and maybe it's because my sleeping pattern is off, but my appetite is really off.

Tylenol, Motrin, Advil, Aleve, etc. all don't work for me. My doctor gave me something stronger a little while ago, but that doesn't help either. He hasn't suggested anything else yet because I haven't gone back to see him since he prescribed the Prednisone. I called to make an appointment, but the line was busy. I left a message, but no one called back so I'm guessing they're extra busy because of the holidays. I'll try again tomorrow.

You're the second person to mention to me directly that you have benefited from taking an anti-depressant. I was a little weary about taking them as I don't think I'm "crazy", but seeing how much it has helped does make me want to give it a try. Thank you for sharing that. I'm hoping my doctor does prescribe something that helps and that whoever he refers me to (a Rheumy) will be just as willing to help me. I'll have to update everyone once I get an appointment.

Thanks again!
Blessings, Love & Aloha,
Ty

Saysusie
11-23-2011, 08:02 AM
I, too, suffer from overlapping conditions. I am one of millions who suffer from Lupus & Fibromyalgia (and whoever the doctor was who said that it was impossible to have both should be drummed out of the profession!). I take muscle relaxers, Baclofen, and Nortryptolene for my FM. The combination works pretty well for me. I have a very high resistance to pain meds and muscle relaxers (so much so that I feel almost NO effects of the Baclofen), so I can take these meds at any time during the day and still function (scary, huh?)
Ty, I am glad that you are here and that you have joined our family here. As you can see, we are all dedicated to helping one another as much as we can and to providing information, answers, and advice. I hope that you get everything sorted out soon, in the meantime, we are here for you.

Peace and Blessings
Namaste
Saysusie

NaturalMystic
11-23-2011, 08:29 AM
Hi Saysusie,

Thank you for responding! And thank you for sharing as well! I'm definitely learning a lot being a part of this family! I was going a little crazy when I first got sick because I didn't know what was happening to me. Then having all of those meds not work - it made me really scared (my mom too).

Wow, it's amazing how different everyone reacts to different meds. I'm amazed to meet someone who doesn't get completely knocked silly by muscle relaxers. I'm happy they work for you! It's definitely a huge relief when you find something that works.

Thank you for allowing me to join this family! Talking with all of you has cleared up so much more than I expected. A lot of questions I hadn't even thought about were being answered just by talking with everyone. I greatly appreciate everything everyone has shared and all of the questions that were answered. And I greatly appreciate having somewhere to go when I need the help.

Thank you, Saysusie, for the warm welcome! :) I feel blessed to be here.

Blessings, Love & Aloha,
Ty

Melodyroseak
11-29-2011, 01:08 AM
I took have all 3, lupus, fibro and RA. I found Cymbalta works really well for me. I go to a neurologist (sp), who takes care of the fibro and migraines. My rhuemy says seeing him is great, sense they are more specialized in the nerves and muscles. I have 4 different specialist, they all send reports to my GP. First thing I do when getting a new specialist is that they MUST work with my GP and if you can not let me know and will find someone new. Has worked out really well so far.

Keep your head up and remember only you can take of you. And finding the best for you is priority. I always disguise everything with my rheumy first.

Melody

rob
11-29-2011, 05:07 AM
Hi Marla,

Thank you for responding! And thank you for sharing! Very interesting information! I now have a love-hate relationship with muscle relaxers. They definitely help me get some sleep, help with the sometimes painful muscle spasms, but I end up 10x more exhausted and with the same "hangover" feeling you get. I'll literally sit for a few hours debating on whether or not it's worth it to take them. I, like you, would rather have a hangover the fun way. :D

Thank you. I am still on a quest to find the right meds. I'm having a little trouble getting an appointment with my PCP (so he can help me or refer me or both), but it is almost Thanksgiving so I'm guessing their hours are cut due to the holiday.

Blessings, Love & Aloha,
Ty

I have the same problem. Muscle relaxants give me a definite "hangover" feeling in the morning.

There is something fundamentally wrong with the concept of waking up with a hangover without at least having had a little fun the night before! (insert smiley face)

NaturalMystic
11-29-2011, 08:03 AM
Hi Melody,

Thank you for responding! And thank you for sharing!

It's funny you bring up making sure my doctors all communicate - I was just thinking about that! I was curious about who my PCP/GP would refer me to as I do not have a rheumy yet. I don't know who else he'll refer me to, but I hope they're all as good as he is. I really don't like going to the doctors because my previous doctors all labeled me as a hypochondriac (sp?). I'd go in for all of the symptoms I'm being seen for now, but it wasn't until this doctor did anybody actually do anything. I guess it helps that I changed not only my doctor, but my health plan. :)

Thank you so very much for your advice! I will definitely be making sure my doctors all know what the others are doing.

Blessings, Love & Aloha!
Ty

NaturalMystic
11-29-2011, 08:51 AM
Hi Rob,

Thank you for responding! And thank you for sharing!

Yes, there definitely is something wrong with that picture! I had to resort to taking them the other day. Today is my "recovered" day, but the migraine is back and so are the muscle spasms.

.... time to choose the lesser of 2 evils......

Thanks again for sharing!

Blessings, Love & Aloha,
Ty

lupyme
12-06-2011, 03:57 PM
Lupus, fibro and sjogrens here. I didn't want to take anti depressants either, but was talked into it. My rhuemy tried a few. None helped. They just made me sick. Muscle relaxers don't give me hangover. I've only taken them a couple of times.

NaturalMystic
12-06-2011, 04:28 PM
Hi Lupyme,

Thank you for responding! And thank you for sharing! I've heard mixed reviews with anti-depressants. I was afraid to take them at first, but after hearing/seeing some of the others' experiences with them, I've decided to give them a try if that's what is prescribed. If it doesn't help me, then I can chalk it up to experience. It's interesting to hear that some people don't get the same effects from muscle relaxers as others. I still have a love/hate relationship with them. I love that they do help with the sometimes horrible muscle spasms, but hate that I feel horrible after taking them. Hopefully I'll find something that'll help without the nasty side-effects :)

Thanks again!

Blessings, Love & Aloha,
Ty

mdawncooper
12-08-2011, 03:19 PM
I am taking Lyrica for the pain and he changed my anti-depressant to Suevella. I do notice now that we are finally getting some cold weather in south Texas that I am much more stiff in the cold weather.

Desleywr
12-08-2011, 04:54 PM
I saw my rhumy for the first time yesterday and he put me on plaquenil and said that I have Lupus and Fibromyalgia and that we will deal with the fibro later after we get the Lupus sorted out.

I also see my neuro who still believes that I have some muscle disorder and that is still getting looked into.

I appreciate reading the responses here and thank you for asking. I am still a little walking arouroman circles from the exam and info I got yesterday.

NaturalMystic
12-08-2011, 09:25 PM
Thank you for sharing, mdawncooper!

Wow, interesting information. Haven't gotten an appointment for my Rheumy yet, so not sure what he'll be putting me on. Prednisone helped me, but not completely. My GP/PCP's stand-in didn't want to prescribe me anything because he said there's so many different medications and so many combinations that he would prefer a Rheumy to prescribe my meds. I wish he did prescribe something because the pain gets pretty unbearable at times. If I don't hear back from the Rheumy by Monday (which is one week after I saw my PCP's stand-in), then I'll call my PCP's office to see if my doctor or his stand-in will prescribe something or find out what's the hold up with the Rheumy.

Keep warm! :)

Blessings, Love & Aloha,
Ty

NaturalMystic
12-08-2011, 09:37 PM
Hi Desley!

Yay! :) So happy to hear you've gotten some meds to help! I hope your Rheumy gets you help for the Fibro soon too!

Wow, I'm glad your Neuro is pro-active in finding out if you do have some kind of muscle disorder. I hope you don't (keeping positive), but glad you have someone on your side to check.

I'm definitely appreciating hearing the answers as well. Thank you again to all of you who responded! It's given me a chance to hear/see what others have experienced and helped ease my nerves.

Good luck with your exams and treatment(s), Desley! :)

Blessings, Love, and Aloha,
Ty

Desleywr
12-09-2011, 05:23 AM
Thanks off to see the cardio on sat for the chest pain and irregular heart beat.

NaturalMystic
12-22-2011, 08:31 PM
Hey Desley! How did your appointment go?

I finally got an appointment with a Rheumy, but it's a "one time" appointment then he's throwing me back to my PCP. Not sure how I feel about that, but I guess it's better than nothing. The one thing that's frustrating me is that my appointment isn't until January 14th. All of this holiday stress is horrible! I started to have a quiet time, but now it's back to a major flare :(

Blessings, Love and Aloha,
Ty

Desleywr
12-22-2011, 10:50 PM
Thanks for asking Ty
I saw the rhumy and was put on plaquinel first week 200 then next week had a halter monitor on for 4days by the cardio as I had been having really bad chest pain and lots of exhausting irregular heart beat. Then now I have finished the halter I have to double the plaquinel. I found the rhumy excellent I also took my husband in with me. I find drs are more thorough when he is with me. I also saw the cardio for the first time the week after the rhumy again with Colin. Both drs appointment over 50min.

I now have to wait for blood test results.... But mischievious me I write on the drs order form for blood test to put a copy to patient so I have a copy of the results already and don't see the rhumy until March. All con firming Lupus with the other issues eg rash, joint pain, heat intolerance, brain fog, etc etc. the heart may be involved or it could be a spasam from the Lupus. I see the cardio not until 28 jan so I can agree with you it is frustrating waiting during these holidays.

I too have headed into another flare!

Are you on any mess yet? Do you have family support? Are you looking forward to Xmas
Have a wonderful restful Xmas and New Year! And big Hugs!

NaturalMystic
12-23-2011, 12:54 AM
Hey Desley,

Yay for pro-active doctors! Glad to hear they're checking everything and spending the time to make sure you're okay :)

I take my mom with me into my appointments just in case I miss/forget something. My memory has been horrible lately and the brain fog doesn't help either.

LOL. I never thought to write a note saying to send a copy to patient. I don't think I would have the guts to do it anyway. lol. I was lucky that my PCP gave me a copy of my results after the first round. I haven't seen him since he sent me to do these latest tests, so I'll have to wait to see if he'll give me a copy of these results also. But I'm sure if I asked him, he'd give it to me.

You have heat intolerance too? Wow, I thought it was just me! I've been getting heart spasms more recently, so I have to bring it up to my Rheumy. I also have to bring up the heavy chest, congestion, and chest pains. I brought it up to my PCP, but I think he's waiting for me to see the Rheumy. I'm hoping this Rheumy listens as well as my PCP does. I don't know him or know anyone who does, so I'm crossing my fingers.

No, no meds yet. I was going to ask my PCP if he can put me back on Prednisone or give me something until I see the Rheumy, but it's so hard to get through to his office. Will have to keep trying cause nothing over-the-counter helps.

I haven't told a lot of family about having Lupus because of the holidays. I know it's no reason to hold it from them, but I don't want anyone to feel sorry for me. This is a time for celebrating and enjoying family - It's not a time to feel sorry. The family I have told (my immediate family and one cousin who I'm close with) are extremely supportive and have asked a lot of questions about what it is I'm experiencing and what it is they can do to help me. I'm lucky and blessed to have them.

I am definitely looking forward to Christmas. It's a nice time of year, I enjoy spending time with family, and watching my nieces and nephews open presents makes me really happy. I love seeing their excited faces.

Are you looking forward to Christmas?

You have a wonderful and restful Christmas and New Year as well! BIG HUGS!!!

Blessings, Love and Aloha,
Ty

Desleywr
12-23-2011, 01:42 AM
Just quickly I had a heart spasam which was thought to have been brought on by Prendisone? So if you too are having chest pain you may want to talk to the Dr before going back on it. I am feeling a little better on plaquinel just started. Be careful! Let me know how you go over Xmas.

A little laugh for you. Colin and I always put a surprise under the tree it doesn't matter how little but it must be a surprise. I have some how seen the first two things he bought so he has gone out and bought the third and I feel so spoilt now getting three all because I some how have seen the first two HEE HEE. Enjoy! A bit naughty hey! Heehee

Have you used the Spoon theory to use to explain Lupus http://www.butyoudontlooksick.com/category/the-spoon-theory/

NaturalMystic
12-23-2011, 03:25 AM
Oh wow, Okay. Thank you for letting me know! I will definitely talk to my Dr before going back on Prednisone. Not sure if he would actually put me back on seeing as I will be seeing the Rheumy in a couple of weeks. But first things first - trying to get through the seemingly always busy phone line. *sigh*

Aww, that's so cute! That's what makes these holidays so special - when someone like that is a part of our life and does even the tiniest things to make us feel so special and loved. You're lucky to have him! :)

Yes, I've used the spoon theory :) It's helped my family understand what I'm going through a lot better than I could possibly explain it. The one thing I did explain to them is that, like each person is different, so are our symptoms. Most of their questions are what type of symptoms do I have, how do I personally cope with my day, how do I choose what to do and what not to do, and what I go through with all the Dr appointments, tests, medication trials, etc. My family has never heard of Lupus before now, so they ask questions about anything and everything. I'm happy they're proactive with finding information and asking questions. It makes it easier to have a "bad" day without having to explain everything.

Thank you for the information!!!

Desleywr
12-23-2011, 03:28 AM
Great talking with you ! Enjoy Xmas!