Yep, I'm sick of being sick

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   Posted 1/28/2009 3:12 PM (GMT -6)   
Lupus sucks. I fell again yesterday while walking my dog. Once Mr. Peabody saw that squirel I was toast. He just loves chocolate vanilla squirel. I slipped on mud in the parking lot. I am sooooo sick of falls. At least I didn't have to go to the ER this time. My daughter was visiting so both she and my BF took care of me. Tory washed my shoes and bandaged my knee while Tim washed my clothes. My next vent is that I've had terrible brain fog lately. It's so bad that I'm suprised that I don't need to write down potty breaks. Speaking of which I had a colonoscopy this month and found I have colitis from the Cellcept. Since I refuse to stop the Cellcept, the gastro doc said I can take as much immodium as I need for my diarrhea. I should buy stock in immodium. It would really boost the economy. This vent is regarding sex, so close your ears. I am taking 80 mg of prozac daily and it has left me with absolutely no libido. Zilch. For me sex used to be such fun and I was one frisky gal. So now I tried to decrease the prozac, but the depression came back. Thank God I have a great man, 'cause he said he would rather see me feeling good than have sex. I know I have lots to be thankful for, but I just get so very &*$#ing sick of all this. Every inch of my body will be hurting for the next couple of days from the fall. But you know I'll brush myself off, cross this bridge and get ready for the next crossing. Just like we all do every day. Love, Butterflake 
Systemic Lupus ('05), depression, diabetes, fibro, gerd, hypertension, IBS, sleep apnea  Rx: Cellcept, plaquenil, prednisone, celebrex, lisinopril, actos, lipitor, nexeum, prozac, seroquel, wellbutrin, actonel, tylenol arthritis, neurontin, phenegren, flexeril, vit C, multi vit, flaxseed oil.  Acupuncture  "Welcome to lupus, where the strange is ordinary and nothing is normal." Donna 

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Date Joined May 2007
Total Posts : 474
   Posted 1/28/2009 4:52 PM (GMT -6)   
Oh Butterflake, I am so sorry! Try to pamper yourself as much as possible the next couple of days. Stick close to a heating pad and maybe a warm bath? Sounds like you have a good man, but remember, he also has a great woman. Sending some extra hugs your way.
Take care,

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR.
Daily Supplements: Calcium, B-100 Complex.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.

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   Posted 1/28/2009 6:22 PM (GMT -6)   
*Sigh*.  Donna.  I'm so sorry.  You sound royally frustrated and angry and you have every right.  Dang it, this disease really tests one's patience doesn't it? 
Okay. I'm glad you brought the sex topic up. You're not alone. I'm on 100mg of Zoloft. It's an SSRI too.  I have no libido either.  None. If 10 of the hottest men in the world walked through my door, not even that would interest me.  It's a catch 22 isn't it.  You go off the med, and your sex life comes back but your depression returns.  Then you don't want sex again because you're depressed.  Good thing you have an understanding guy!  My hubby is too.  To a point.
I have nothing to suggest for the sex issue.  I'm looking for answers too!  I sure do hope your colitis (which is one more thing you don't need) responds well to medication. 
I know it's rough right now. Take deep breaths.... Treat yourself well.  No more falls!!! LOL.
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
Moderator for the Lupus and Fibromyalgia forums

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Date Joined Oct 2004
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   Posted 1/28/2009 9:26 PM (GMT -6)   
((((( Donna )))) I am so sorry you fell again, take it easy and let your family pamper you. I hope the immoidum helps you, I know exactly what you are going through, I had diarrhea every single day from Aug 2002 to May 2005! As far as the libido, mine left the building too! Thankfully I have a wonderful hubby too, what would we do without our great men? Maybe there will be others along shortly to give you some advice I just wanted to give you some (((hugs))) and let you know you will be in my thoughts and prayers.
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)

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Date Joined Dec 2006
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   Posted 1/28/2009 10:14 PM (GMT -6)   

Hi Donna, is there any way you can get someone else to walk the dog? or have a fenced in yard or something? I mean I love my animals but not enough to fall down for them. Maybe you should call the dog whisperer. Shoot that would be a great story for him. You could promote Lupus too. idea . What can I say my mind is weird. Oh the fog is so embarrassing. It actually scares me. Here I have all these other issues but losing my ability to remember makes me feel so totally out of control. There are things I can remember every detail that happened years ago. Than there are things I can't remember that happened yesterday. When I forget important things that involve my loved ones that really hurts. I don't know what they think. Imagine someone pours out their heart to me  and I forget it ever happened. cry

You mentioned one thing that I am not sure I know what it is "SEX" I think I heard that word once or twice several years ago but it's all kind of fuzzy now. I guess that is the up side to be alone. I don't feel quilty. I'm glad you have a good man but you two deserve to have a great sex life. You shouldn't settle for less. Maybe you could see a counselor/therapist. I'm not thinking that he would leave or anything I'm just thinking that I beleive there has to be some way to have an intimate relationship with your partner. It would probably help in lots of ways.

Ok this coming from somone who hasn't had any since the dead sea was just sick. tongue

I hope you arn't down and too bruised up for long. Love ya!

Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, provigil 200mg spirivia,aciphex,lasix ,pot.chlor.,B12 ,iNDEROL
Bear ye one another's burdens
Galatians 6:2 KJV


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Date Joined Jun 2006
Total Posts : 1531
   Posted 1/29/2009 9:17 AM (GMT -6)   

Hi Guys. It's so good to be pampered by you. Fran, thanks for reminding me that I'm a great woman. I needed to hear that. Ginny I love your comment about ignoring the 10 hottest men. I would look at them and think, "That one has great shoulders, or a great butt, or nice eyes" and that's as far as my thoughts would go. I know I should want to think of more, but nothing happens. Stacie I hate to say this, but it's good to hear another lupie has had record diarrhea, running the great race. ((Carol)) you're so funny. I know the minute Ceasar met us he would say that my BF was clearly the pack leader. Then he would try to train me to have that "sshh" serious voice. As for the fog, I really, really hate it. I seem to have no short term memory and I too forget extremely important things. Last week I forgot my daughter's graduation from Le Cordon Bleu. Man I'm really trying not to beat myself up because I'm doing all I can to help remember, but it's so awful to forget to look at the calendar. Lastly, I know that I should make more of an effort to be intimate. I'll write it down! I love you all. Butterflake 

Systemic Lupus ('05), depression, diabetes, fibro, gerd, hypertension, IBS, sleep apnea  Rx: Cellcept, plaquenil, prednisone, celebrex, lisinopril, actos, lipitor, nexeum, prozac, seroquel, wellbutrin, actonel, tylenol arthritis, neurontin, phenegren, flexeril, vit C, multi vit, flaxseed oil.  Acupuncture  "Welcome to lupus, where the strange is ordinary and nothing is normal." Donna 

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Date Joined May 2005
Total Posts : 6923
   Posted 1/29/2009 11:20 AM (GMT -6)   

So sorry about the fall - I know it gets pretty scary to be falling all the time - I hope the aches & bruises mend quickly.

I wonder if a different anti-depressant might help with the libido issue? I haven't had any issues with Wellbrutrin (well, I think I haven't, but I have been thinking my partner is awfully boring - maybe it's me!) Or it could be the Cellcept rather than the antid is part of the issue.

One thing about the potty issues -- do you take the Cellcept with or without food? My doctor specifically told me to take it with a little bit of food, and I didn't have the issue. Although we do all react so differently....

so much for those "one size fits all" socks....

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 6mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex

Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

"Life is far too important to be taken seriously." –Oscar Wilde, 1982


Regular Member

Date Joined Jun 2006
Total Posts : 77
   Posted 1/29/2009 2:46 PM (GMT -6)   

HI Butterflake,  I can relate to every one of your issues today. I used to have a great libido also but it changed with prozac. I asked my doctor at the Mayo Clinic about it and I got a small lecture about my age yeah yes I did! (57). I'm now on effexor which makes the O possible again but still not much in the libido (desire) dept. but that doesn't mean you can't enjoy great big O sex. Sat. night is 'my' night and several other nights are 'his' nights. (Well he enjoys 'my' night also). I might be too tired, in too much pain but we always do it and it is wonderful. I take more pain meds beforehand and usually a nap during the day. My lower half goes numb if there is pressure on it (like when getting a back massage and he's sitting on my legs) so we are careful about that. I don't want this post to be deleted but I'll just say, don't be afraid of using 'aids' (that plug in). I don't post much but I love this forum. This is such an important part of a relationship and I hope it improves for you. Blessings, Deb

DX: lupus, headaches, hair loss, high blood pressure, allergies, chemical sensitivities, photo sensitivity,  muscle spasms, neuropathy in hands and feet, type 2 diabetes
Meds: cellcept,2000 mg/day prednisone 7mg, cozaar, effexor, trazodone, lunesta, vicodin, imitrex nasal for migraines, metformin, insulin, simvistatin, nasonex and astelin for allergies.

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Total Posts : 1531
   Posted 1/30/2009 10:57 AM (GMT -6)   
I took some extra pain meds and drove over to Lynnwoods' house yesterday. It's so great to have another lupie close by who knows all the issues. She brought up a point: she hates it when she sits in front of the TV watching some awful show and is just too tired or zoned out to change the channel. I do that too!! This is coming from women who used to never even watch TV. Oh those lifestyle changes.   Deb thanks for reminding me to make the effort to have sex. I know it will help my relationship. I like your suggestions such as taking a nap prior (not during) and extra pain meds. At 51 I'm not ready to give up either. Thanks everyone. Love, Butterflake

Systemic Lupus ('05), depression, diabetes, fibro, gerd, hypertension, IBS, sleep apnea  Rx: Cellcept, plaquenil, prednisone, celebrex, lisinopril, actos, lipitor, nexeum, prozac, seroquel, wellbutrin, actonel, tylenol arthritis, neurontin, phenegren, flexeril, vit C, multi vit, flaxseed oil.  Acupuncture  "Welcome to lupus, where the strange is ordinary and nothing is normal." Donna 

Melissa D.
Regular Member

Date Joined Aug 2008
Total Posts : 330
   Posted 1/30/2009 12:36 PM (GMT -6)   
Hey Butterflake,

I'll have to remember the pointer you gave "to take a nap prior not during" I'm sure it will help my relationship as well and my husband will get a lot more out of it if I'm awake...LOL ! Seriously, I feel like that sometimes though, I just want to lay there and say "are you done yet" which is so not the old me. But like Lonna, I am on Effexor, 150 mg, which in my mind is a huge dose and it has affected the libido quite a bit. I'm only 41 and I don't want to loose that part of my relationship, but there are times when it feels more like a chore than a joy, doesn't it?

Anyway, I just love you guys and this forum! I would never discuss this with anyone, not even my closest friend because she just doesn't understand.

Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis

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Date Joined Dec 2005
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   Posted 1/30/2009 4:37 PM (GMT -6)   
Donna, I feel your pain. After years of numbness, I finally found a sympathetic OB/gyn who told me that just because I'm sick doesn't mean I have to lose all fun in life. There may be some small things they can do to help alot. If you doc isn't sympathetic, I would try to consult with one that is. It can really make life depressing to lose this part of you.

I take Bentyl, an antispasmodic, for diarrhea, only immodium when its bad. If you get sick of immodium, you might ask if the other will work. It seems to last longer for me though it doesn't work as fast, so I end up taking immodium at first if its bad, then bentyl to maintain. I got horrible diarrhea on prozac and then ended up getting a rash and found out I'm allergic to it and cannot take it, though it took a few months for things to get to that point. If you get a rash, be careful. Also features of my prozac allergy was short term amnesia, which was bizzarre, I was thinking of your brain fog. Just becareful because the liver and kidneys can only take so much meds and docs like to prescribe big doses of antidepressants and they are notoriously hard on the liver, so if you get a rash, make sure you let the doc know.

It is awful and I hope that things get better and calm down and that Mr. Peabody makes it up to you!
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

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   Posted 1/30/2009 8:30 PM (GMT -6)   
((((((Donna)))))) I hear you about being sick of all of this - I'm right there with you and have been going through a major "poor me" phase which I am trying to kick myself out of. I also relate to the libido thing. I feel like I'm in a perpetual state of exhaustion which does not lend itself to intimacy. Like you said, there are times I'm too tired to change the channel let alone anything else.

Falling is scary and I'm glad you didn't have to go to the ER. I seem to fall a lot too and so far all I've gotten are a bunch of bruises. It stinks that I have to worry about breaking a hip when I am only in my early 40's. I'm glad you got to visit with Lynnwood. There's nothing better than talking to people who can really relate. THis site is the one place I can come and know that people really get it and understand.

Hang in there - we are always here for you.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Barbara Lee
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Date Joined Sep 2003
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   Posted 1/30/2009 10:48 PM (GMT -6)   
Hi Donna:

Sorry it's taken me so long to reply to your post. First off (((((hugs))))) nice gentle ones, I hope you've recovered from your fall. I'm very thankful that you didn't break anything. I'm thinking Carol made a good suggestions as to hiring someone to walk your dog for you. I'm sure you could find maybe a teenager who would like to earn a bit of money.

As to the libido issues, lets just say we've not been intimate in a loooooong time. I too like you have a great hubby when it comes to this. Or at least I like to think he's understanding and doesn't have a young, more beautiful young woman tucked away somewhere. I couldn't honestly blame him tho, if he did, men do have needs that need to be met. I'm just so dog gone tired and I hurt with pain 24/7 it is a struggle to even shower daily, let alone to work that into my daily routine. Plus having a teenager in the house make me feel awkward about the whole thing. Anyway, I'd discuss it with you doctor and see if they could either change your medication or offer up a way bringing your libido back.

I sincerely hope that you had a lot of pampering over the past week and you're feeling much improved. Sounds nice that you were able to see Lynnwood, you're right it's nice to know someone with our issues in the same town. I hope that you have no more falls this weekend and I pray that you're pain free this weekend. Take care of yourself and keep us posted on how you're doing.

dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

Regular Member

Date Joined Jan 2006
Total Posts : 395
   Posted 1/31/2009 12:58 PM (GMT -6)   

Hi! Butterflake and Everyone,

Yep, no argument here, lupus sucks! I am so glad you brought the "sex" word up, (I will whisper the next few lines). Sex, or lack thereof, is a big part of relationships. May I tactfully suggest that a partner might benefit from verbal, and/or non-verbal "encouragement" to meet their own sexual needs? Trying to get past the learned stigma of "self directed satisfaction" if you get my meaning, where too many of us learned at a toddler age that "touching yourself" is wrong, and the teenage years where "shame and guilt" often accompanied a cold shower. Where is Dr. Ruth when we need her? Sleep or Sex?...... too often it isn't even a choice. I am sometimes near tears with exhaustion, that goes way beyond mere tired, and I literally fall in bed. My husband moved into our spare bedroom for me. It was going to be just for one really bad night, now it's been two years and I miss him, but do sleep better. I am also grateful for our "chats" here, too.



ps. I just got one of those thick magic foam mattress toppers, and it really helped my hip pain. :-)

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.

Regular Member

Date Joined Jun 2008
Total Posts : 363
   Posted 2/3/2009 6:04 PM (GMT -6)   
I'm not on any drugs that affect libido, but I'm so tired that I have lost all interest in sex. My hubby snores horribly loud and he moved into the other bedroom when the baby was born so as not to wake him, that was 19 months ago. I know he gets frustrated because we used to have such a fantastic sex life, it's just with two young boys I have no energy left at the end of the day. I finally get the kids to bed and that's the end of my energy. I keep hoping that when the kids are a little older that we'll finally be able to get some time to get to "know" each other again. In the meantime, we politely avoid the topic of sex and retire to our seperate beds. It really sucks, but I need every bit of rest I can get.


PCP pretty convinced- Lupus , Taking plaquenil,Propranolol,  Flexeril,Claritin, Zantac,Ambien,vitamin B-12, multi- vitamin, Lortab.   Mom of 2 boys 1 and 6.  Symptoms: Fatigue, joint pain, heat/sun sensitivity, mouth and nose sores, malar rash, migranes, awful hives, positive ANA, and RF.



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Date Joined Jun 2006
Total Posts : 1531
   Posted 2/4/2009 8:35 AM (GMT -6)   
Hi Everyone. Hippi, Barb, Mel, Marji, and Jen, I hate to see so many of us have sex issues. Deb and Sue, you both have given me some ideas. I like the "Saturday night is my night." I've become so used to asking for help only when I need it, that I forget that my BF would enjoy simply pleasing me. What a concept! My BF and I have always slept in separate rooms, so we sure need the cuddle time. We also both agree that anything purchased that might help my libido is money well spent. I hope that soon all of us will sing "Back in the Saddle Again."  smilewinkgrin  Love, Butterflake 

Systemic Lupus ('05), depression, diabetes, fibro, gerd, hypertension, IBS, sleep apnea  Rx: Cellcept, plaquenil, prednisone, celebrex, lisinopril, actos, lipitor, nexeum, prozac, seroquel, wellbutrin, actonel, tylenol arthritis, neurontin, phenegren, flexeril, vit C, multi vit, flaxseed oil.  Acupuncture  "Welcome to lupus, where the strange is ordinary and nothing is normal." Donna 

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