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Inky
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Dear all
As i have started flaring (pain, fatigue etc. etc) I notice that my anxiety levels are going up and up. I jump when the phone rings, feel edgy and irritable, on the edge of tears for very little reason, but mostly it is this underlying feeling that something terrible is going to happen and that I am edging out of control. It has got so bad that my partner is trying to keep the outside world off me for a bit. I am off to see the doc this week and discuss it. Nice doc but a new one so I want to have info before I go. We have a fair bit of financial stress right now but when I am well this is not something I couldnt deal with but at the moment everything seems insurmountable. But weirdly this feeling comes and goes, worse when pain and tiredness worse. Awful when I wake up (always in pain, always still tired) with my stomach churning, gets better as the pain meds start working then worse again. Not sure this is making much sense.
Does anyone else get this stomach roiling anxiety and if so do you take meds for it. I have had mild CNS symptoms before and wonder if this is that again, but how do i tell?
Thanks
Sara
 

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Hi Sara, yes, I take Paxil for anxiety. Have taken it for 9 years now and I can easily say it saved my life. I've had anxiety, complete with full-blown panic attacks, for my entire life. The first one I can truly remember I was no more than 4 and maybe was just 3. I can remember that horrible, heart pounding, stomach twisting, jumping inside and feeling of doom just like it was yesterday. I wish someone had prescribed Paxil for me when I was a child. My life would have been better, I would have made better decisions.

Tell your physician that you're having anxiety and let him/her know that it's bad enough that your life is being affected. A whole array of medications is available to treat anxiety. But once you've adjusted (and please, give any new medication like this time to work before you pull the plug) you will be grateful to put severe anxiety behind you.

Good luck and keep us posted,
Sunny
 

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I also take Paxil for anxiety. Mine was not as bad - but I tended to spend a large amount of time convinced bad things were going to happen, even when I knew that logically there was no way they could happen. I love the Paxil.
 

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florie
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Hi Sara,
Everything you mentioned is exactly what's happening to me. I am taking an antidepressant(Zoloft), and i take clonipan for the anxiety, trazadone for sleep helps with anxiety also. Medicines work, sometimes as illness and stressful times come in the medicines are usually increased or changed. I know the feelings of anxiety,it is overwhelming.The panic,the mind worries,you feel like your world is closing in. With fianancial situations makes it worse(like my fiance out of work) waiting to hear from unemployment.
And yes my stomack becomes ill,no appetite, same when the phone rings I get panicked,loud tv drives me up the wall, love grandchildren but can only deal lately with a short visit. I feel my safety net is home. But i am currently getting treatment with a therapist,every 2 weeks.It helps and i am trying to do what she said.When i start feeling negetive change the channel.(not the tv). Do something to change your feeling. It's very hard for me right now, because i am having a reaction to something as you know with my skin. Could be nerves, lupus,or something else going on.

I hope you will talk to your doctor about all these feelings.There is help and we need to take care of ourselves. It's hard for our relationship because when someone loves you and wants to see you better,they try their best to understand and be there for you. Then at the same time you feel bad about your partner dealing with it. But yes, jot eveything down and discuss these symptoms with your doctor. Get well soon,and let us know how it turns out.
Hugs, Florie
 

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Mildly stricken; blue
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I have such a hard time teasing apart my symptoms, as I've always suffered from depression and anxiety. But, looking back, many of my swings into depression or anxiety match up with times when I have physical symptoms (which would fit in with lupus). I used to call this "pill withdrawal," since I first experienced it with medication withdrawal in the 90s. Maybe it's lupus! Seems much more likely.

I'm still learning to recognize when I'm feeling anxious, like when it's building over a period of days, or when it's out of control. For me, out of control is where I have physical symptoms, become an extra germ-phobe, or think that a terrible natural disaster is about to happen. These things are clues that I need to take some action, especially since anxiety and stress impact my health. Stress is my number one flare trigger, as far as I can tell.

I take klonopin every day - .25 in the morning, and .75 at night. For years, it has seemed to help stabilize my moods. When I'm having a total freakout or emotional breakdown (many times I'm crying but it's due to anxiety), if I'm lucky, I'll remember to take .25 - .5 mg. Sometimes family or friends have to suggest it to me, 'cause I'm so busy being upset! But when you're that bad off, there's not much you can do or accomplish.

I will sometimes get panic attacks, and take extra klonopin then, too. They started when I first started to really "get sick" with fatigue. I manage those pretty well, though, once I recognize them for what they are.

Other meds I take include Cymbalta, Wellbutrin, and Adderall XR. Adderall and Wellbutrin can make anxiety worse for many people, but for me it's worth it because it helps my focus and depression/apathy.

I know I need to find additional ways to control anxiety and tools to better manage my life. For the past several months, Sudoku has helped. It also has the added benefit of letting me know if I'm having any cognitive issues. Sometimes, I zip right through them, and other times I can't complete even the simplest puzzles.

Oh, and one final note about klonopin and benzos in general - many doctors are very anti-benzodiazepine, saying they often lead to drug dependence and addiction. If you do take a benzo on a regular basis, at a regular dose, if even for only a few weeks, you will become dependent on that dose and will experience withdrawal if you go without the medication. This is something to consider, if you do not want to be tied to a drug. Klonopin, for example, cannot be taken when you're pregnant. If I ever got pregnant, I'd have some major detox to go through! But, if you stagger doses or are able to take the meds responsibly on an as-needed basis, they are relatively benign. They are also anti-convulsants, so if you have any seizure worries, they will help out a bit.

Other, less commonly used meds I've tried depression and anxiety have included lamictal, topamax (made me more myopic with severe chemical lobotomy-type feeling), and buspar. Many times, my medication choices are made while considering other symptoms that are likely tied to lupus, like migraines, seizure threshold, fatigue, and body aches and pain (Cymbalta is a good one for this).

I...um...take lots of pills. I've taken lots of pills. I'm a fan of klonopin, and I've never abused it. It really has done a lot to get me through and to help prevent me from getting myself worked up even more - it can take me out of that desperate state.
 

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HI Sara,

I became very anxious with a big flare.
People would say its because of the worsening of my lupus , worries about work etc etc, but looking back I believe it was as much a symptom of the lupus as the joint pain.

Anyway I became deperate and started Citalopram which takes at least two weeks to work. Be warned those two weeks were absolute **** as symptoms are often worse before easing.

I think it helped though..........but I think the real help was the lupus improving (steroids and stuff). For that reason I've come off it now after seven months , with no deterioration in mood. Fingers crossed.
Looking back it was really a horrible experience.......this abstract fear of simple things.
I hope you find some relief soon. Reading your other posts it seems your lupus is not well controlled just now.

Good luck
 

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Inky
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Discussion Starter #8
Thank you so much all of you. Will reply in detail prob. tomorrow. Headache fron **** and computer screen too bright for me today. Sara xxxxx
 

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Inky
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Discussion Starter #9
Hi everyone , thanks for replying.

I cannot take some of the drugs you mention (like Paxil, Zoloft or Citalopram) because they are an SSRI drug (same family as prozac) and both times I have tried that family of drugs I have had a lupus flare (massive rash all over and joints unable to move without pain). The only anti-depressant that I could take was lofepramine and although it worked I kept breaking out into drenching sweats, I do anyway sometimes but I was positively swimming in public when I took this med. I am hoping the doc will give me something very short term to break the pattern of panic but i bet he tries just an anti-depressant, so as one of you said, two weeks of **** waiting for it to kick in and coping with side effects.

I think I need to get to try and find out whether it is lupus and CNS stuff going on (which I suspect as am having blinding headaches and my eyes have become very light sensitive this week) or whether it is stress making me panic and the stress also making the lupus worse. Definitely getting panic attacks.

I am coping by sticking my ipod on or reading a romance or watching something gentle on tv, worse at night and terrible in the morning when I wake up feeling terrified. Not long now to doc appointment. Just hoping I don't panic driving the car as not been out for quite a while. Ho hum, what a lovely illness this is not.

Florrie I am sorry about your fiance being out of work, this is not good news for you is it. I hope he finds work soon. I keep thinking we have adapted to less money but the prices keep rising and without me having energy to cook we eat less economically. Oh well - i keep telling myself that everything changes.

I agree with hardcandy that it is a good idea to find methods to cope with the anxiety, but in the middle of a panic attack I don't think of grabbing my ipod or breathing deeply I just think of climbing under the quilt and screaming. :mad:

Anyway thanks again, feels better just knowing I have people here I can turn to.
Love Sara
 

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Hi :),

It always suprises me when I read these messages here.;);) How often we share similar things that are difficult to understand by those not having lupus. When I am in a flare everything seems so black and white and I am always afraid for bad things to happen.
It is difficult to explain but it seems like the fear has a hold of me and draws me into its own world.
I have been taking Seroxat (Paxil) for about 4 years now and it has worked very well. Lately however I am having so many flares and it seems like the Seroxat is not helping me enough. I am not taking a high dose ( first 10 and now 5 mg) since I am on heart meds too.


I really hope you find the right med for you !!!!!:):)

Hugs

Maura
 

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Inky
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Discussion Starter #11
HI Maura,

I am sorry you get this anxiety too. I know what you mean about everything seeming black and white. I am sure it is the flare making thinking rationally more difficult, whether because of pain, tiredness, depression or CNS involvement. Probably all of them. The fear does seem to have some awful grip doesn't it?

I, too, don't seem to be flaring more often than before. Certainly the meds I am on don't seem to be enough these days. This constant nagging illness and exhaustion are not much fun. Only a day to go to doc appointment. Just hope I don't burst into tears.

Sara
x
 

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Hi there!! I read that you can't take SSRI meds I am taking elavil or amytriptaline (SP) for pain and depression ans anxiety, I find it works for me, its a trycicaline (SP) med it may be a better option for you, I also take Klonopin (sp) for anxiety or restless leg also I take more often for my twitching toes.
Ask your doctor about your options and see if they can find an alternative to help you feel better.

I do think that when flaring our anxiety goes up because we are fighting something off PLUS its the unknown of how long will this last or whats next or is anything being damaged internally, they are all legitamate and real fears for all of us, so know that you are not alone and that we all pray you feel better, but PLEASE talk to your doctor about options, also search the net for alternatives and go to your doctor armed with possible options that you think may work for you!! Wishing you the best!! Hope you feel well soon!!:)

PSSS I think I need to start learning how to spell my meds!!
 

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Inky
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Discussion Starter #13
Hi Laura thanks for your reply.

I have been on lofepramine before which is similar to amitryptyline so I was thinking I maybe need to go back on it for a bit. I am going armed with info to my doctor. If I can get this anxiety under control i think i will rest more and that will help my other symptoms.

Thanks for you help and kind thoughts.
Love
Sara
 

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Sara
I was thinking have you been diagnosed with Fibromyalgia (sp) again, anyway I also take Lyrica which I think also may have some relaxing properties, ask your doctor, I know what you are going thru so I can sympathize anxiety is one of the worst feelings, and unless you experience it on a day to day minute by minute way you can't really understand it, but I do, I have been there, I take comfort in knowing I have the klonopin if needed and the elevil (I also don't respond well to SSRI's) Please know your not alone and I will be praying for you and keeping fingers crossed you get relief soon!!




sjink;514714 said:
Hi Laura thanks for your reply.

I have been on lofepramine before which is similar to amitryptyline so I was thinking I maybe need to go back on it for a bit. I am going armed with info to my doctor. If I can get this anxiety under control i think i will rest more and that will help my other symptoms.

Thanks for you help and kind thoughts.
Love
Sara
 

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Inky
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Discussion Starter #15
cispence98;514721 said:
Sara
I was thinking have you been diagnosed with Fibromyalgia (sp) again, anyway I also take Lyrica which I think also may have some relaxing properties, ask your doctor, I know what you are going thru so I can sympathize anxiety is one of the worst feelings, and unless you experience it on a day to day minute by minute way you can't really understand it, but I do, I have been there, I take comfort in knowing I have the klonopin if needed and the elevil (I also don't respond well to SSRI's) Please know your not alone and I will be praying for you and keeping fingers crossed you get relief soon!!
Hi cispence ... I don't seem to have fribromyalgia - i don't have all the sore spots required for diagnosis. Anxiety is awful isn't it, like keeping a lid on a boiling cauldren of worries that keep popping out of the top regardless, and most of the worries are pretty irrational. The wierdest thing is waking up anxious, never been like this before. Oh well, thanks again, your thoughts and prayers appreciated.
Take care
Sara x
 

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Inky
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Dear All
Just to let you know that I have been to the docs and now have a half-hour appointment tomorrow morning with the mental health nurse at the surgery. He is the best person to assess me apparently and then can recommend the right treatment to the doc. Doc says the anxiety is easily helped/treated and that I just need to try and rest today. I also have to phone the lupus clinic and see if my NSAID (arcoxia) can be changed as that may be contributing to the sweating etc. Doc was lovely although admitted that he could not really help with the lupus side of things and that was best dealt with by the hospital. I do feel better, nervous about tomorrow but pleased I got such a speedy appointment.
Will let you know how I get on tomorrow and what the plan from there is.
Sara x
 
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