Question for those who also have Fibromyalgia

[Roselover]

For those of you who have Fibromyalgia in addition to POTS, I am curious if you have had any success with SSRI's? I am trying to decide if I will try one or try Wellbutrin. I have read many articles etc that suggest that SSRI's can actually make Fibro symptoms worse.

Just wondering if anyone can give me input on their experience.

Thanks

~Roselover

[morgan617]

I don't tolerate ssri's at all. I've had fibro for about 30 years. At one time they put me on sinequan which is a tricyclic antidepressant, but that's when my pulse first really went bullistic. I was 29. It forces you into a deep sleep and that's all I did, then the tachy set in. I haven't really found much of anything that helps it. I just live with it. Occasionally when the pain is just too bad I will take an aleve or something. I don't know about it helping others. I got fed up a long time ago with the stigma associated with it and never even told people I had it, no matter how miserable I was. How sad....Now they are finding out so much more about it. Sorry, not much of a help. I've always just toughed it out. The weird thing is, when I told others who had fibro I didn't take pain meds and stuff for it, they told me I couldn't possibly have then...isn't that ironic, I got it from both sides....morgan

[LindaJoy]

Hi, Roselover,

I too have fibromyalgia and have been on Zoloft for over 7 years. My new family doctor is now weaning me off of the Zoloft because she doesn't think I need it as my old family doctor is the one to put me on Zoloft for panic disorder, of which I don't have. I'm not sure if SSRI's do any good for fibromyalgia. I too have heard that some doctors will prescribe them for fibro, but personally, I'm not sure they do any good, nor have I heard any fibro patients praising them. I'm sorry, this hasn't been much help. What I"ve noticed with the Zoloft is that it gives me anxiety symptoms, which in turn, probably make my muscles tense which gives me more pain, so for me, it may be a good thing to not be on it.

Hopefully, you find the answers you need to help you get along better!

LInda

[nantynannie]

Hi Roselover,

Hi have fibro with POTS and I take Cymbalta. It is supposed to help with nerve related pain but I can't say for sure that it is helping and sometimes it does make my heart race. I was on Lexapro before that and did not notice any help with pain at all. One thing that has helped the pain is Zonegran (not an SSRI) and another is Ultram (pain med). Hope this helps.

Ann

[blackwolf]

i had really good luck on paxil, but had to quit for other reasons. be careful as tricyclic antidepressants, are a no-no for most patients with POTS/NCS.

wellbutrin has it's pros and cons, the word i have heard is either love it or hate it.

best of luck,

blackwolf

[briarrose]

They tried to give me the Fibro label many years ago and I wouldn't let them. They also tried to give me the Chronic fatigue label a few years ago when I was at my worst and again I wouldn't let them.

Rose, you need to be very careful because you live on the West Coast and the doctor's treat you much differently out here with those labels. Most doctor's out here don't believe in either and will treat you poorly. I'm not trying to scare you but I work in a the medical field and have talked to enough doctor's and they roll their eyes at those two diagnosis.

SSRI for POTS are prescribed much differently then for psychological usage. For POTS, if your doctor knows what they are doing, will give you about a quarter of the recommeneded dosage. It's just enough usually to help with symptoms.

And just like beta blockers, you might need to try a few SSRI's before you find one that works for you and your body.

You might be interested to know that many have said that at least 1/3 of Chronic fatigue patients are actually undiagnosed POTS patients. So it would be interesting to do a study on some of the fibro patients too.

I'm wondering if you've read this great article? I've attached the website for you

http://home.att.net/~potsweb/POTS.html

here is 2 paragraphs from it

Celexa (citalopram hydrobromide) is a selective serotonin reuptake inhibitor similar to Paxil, Zoloft, and Prozac, but with the claim of fewer side effects and less potential for negative drug interactions. Serotonin reuptake inhibitors have been used for many years to treat neurally mediated hypotension and syncope (passing out). The mechanism through which central serotonin levels effect blood pressure and heart rate has not been fully mapped out. The net effect of Celexa appears to be to increase nerve communication and stimulation of the standing vasoconstriction reflex. This limits venous blood pooling and increases orthostatic tolerance. Celexa and the other serotonin reuptake inhibitors are known to increase norepinephrine release to varying degrees.

Celexa has been used with some success in treating patients who have been unable to tolerate the older drugs used for treating POTS and NMH. Some doctors now use Celexa as a "first use" drug of choice for treating some types of POTS. Celexa is also reported to have the potential for reducing the effects of central sleep apnea, which often accompanies the onset of POTS. Treatment is started at a very low dose level of 5 mg a day or less, and gradually increased over time. Taking a full dose immediately is reported to make patients even more ill while a gradual increase in dosage is often well tolerated.

[Sophia3]

do NOT be afraid of the label CFS and FM. GOOD DOCTORS KNOW they exist but good doctors ALSO PROPERLY dx each.

I had CFS dx for YEARS then the pain of FM. BOTH WERE LEGIT. Immunologists and rheumatologist confirmed the dx. Don't be afraid if you have those lables when they are used correctly.

Here are some articles on FM and I was part of the study on GHB by Martin Scharf listed on the sites. It didn't help my alpha delta problems tho but I was grateful to have the study done for months.

We NOW KNOW my CFS and horrendous exhaustion is from my POTS.

http://www.medscape.com/viewarticle/459329_print

http://www.immunesupport.com/library/showa...e/1/T/CFIDS_FM/

[briarrose]

Sophia

I'm not necessarily afraid.

I think that anyone that lives on the West Coast is already aware of how they will be treated when they use the words Fibro & CFS, It's harder to get treatment and respect from the professionals. It's really hard to have this understanding unless you've travelled from East to West, it's like two different cultures. I know it's probably hard to believe but it's very true.

[Roselover]

Thanks for all the input everyone. It sounds to me - once again - it's a trial and error thing. I really hate this!!!

Sophia and Briarrose - don't get up in arms... ... there is a lot involved with the diagnosis of Fibromyalgia. Briarrose is right, you do have to be very careful how and who you tell about fibro here in the Northwest. I was able to be seen at the Fibromayalgia Clinic at OHSU and so far, I have not been dismissed because of this diagnosis.

At OHSU they take Fibro seriously and are doing a lot of research on it. In fact one of the main researchers in the country is at OHSU - Dr. Bennet. Here is what is really interesting. They believe that fibro is actually going to end up being defined as a neurology problem. They believe it is based in hormonal malfunctions - possibly located in the hypathalmus. Begining to sound familiar???

For me, I found my doctor more interested in the pain and solving that problem because she couldn't think of anything to cause the fatiuge. But I believe my dysautonomia came first and my fibro is secondary. May never know...

Briarrose, the article you posted was very good! Thank you so much. And I agree about about the label of Chronic Fatigue. In fact, it was funny. When my primary was first trying to find out what was wrong with me, I looked her in the eyes and said "Do not tell me I have Chronic Fatigue. I don't believe in it!" We both laughed and now I believe in it, but also think there are a large number of causes - and mine is POTS! When I seen new docs or go places for treatment, I don't even mention the Fibro anymore - although I do sometimes mention I have a magnified pain syndrome when I am getting IV's etc. It seems to help them be a little more careful.

Sophia, I too was in a study for fibro. It was testing Mestinon and excersise tolerance. Four groups - one placebo and no exercise, two placebo and exercise, three mestinon and no exercise and four mestinon and exercise. I ended up in group three, but for six months thougt I was in group one. Obviously, it didn't help me, but they did have great sucess with most fibro patients. I think my POTS/dysautonmia is causing most of my problems and that may be why it didn't work well.

My biggest concern is that I don't want to take anything that will flare up the pain, but it sounds like I will need to just take the plunge and try. I like the idea of starting very slow. Sometimes my primary doesn't understand that.

Thanks all for your input.

~Roselover

[morgan617]

I know nothing of the treatment back east, as they will not lower themselves to see me but Briar is right about the doctors here. The rheumatologists REFUSE to see fibro or cfs in my city, as do most internal and family physicians. Mostly what you find are a very small select group of doctors that truly believe in these disorders and will treat you. And I mean small. This will end at some point however, as they are really beginning to make progress in finding abnormalities in these conditions and you can't refute the truth in science, as a rule. As for which came first, to me it's like the egg or the chicken. It doesn't really matter which causes which, only that both are awful. morgan

[Roselover]

Morgan,

Yes, I agree... which came first? They are both awful. When the fatigue plagues me most, I say "if only it was just pain... I deal better with pain." (I birthed three babies with no meds!!) BUT then the pain hits hard and I say "If only I could get the pain under control, I could handle the fatigue". Yep - they are both awful!

~Roselover