FYI re: chronic fatigue

[Gennysmom]

The other thing I've noticed is that a lot of people seem to have auto-immune disorders as well.  I wonder what the percentage of AN patients with MS/Fibromyalgia/RA is compared to general pop stats.  I was thinking this already, then Statics post of her recent Fibromyalgia diagnosis has really got me wondering.  So far, knock on wood, I have nothing else going on that I know of.

[ppearl214]

add me to the list of AN'ers with FMS.... my first (of, unfortunately, many) diagnosis  to my on-going medical nightmare....... informed my FMS was secondary to primary issue... not AN related. Was diagnosed 7 yrs ago with primary issue and FMS.... my AN diagnosed almost 3 yrs ago.

[Jim Scott]

Interesting thread.  I must be an exception.  When I first presented to my PCP (fatigue, balance problems, loss of appetite/unintended weight loss, head pain, etc) he sent me to have blood work done - looking for a thyroid problem.  My blood work showed a perfectly normal-functioning thyroid.  Next came the MRI.  He was looking for a sinus problem.  Surprise!  It was a large AN. 

I don't have Fibromyalgia but my wife has suffered with it for over 15 years.  She has all the symptoms (it's a clinical diagnosis) and takes a variety of medications to help her function semi-normally.  Of course, everyone tells her she 'looks great' (she does) but she often fells lousy.  This being the case, she has empathy for me and anyone who suffers from maladies that are not necessarily obvious. 


Jim

[ppearl214]

Jim, fast question please... is your wife on Lyrica? Been investigating it (I got 17 out of 18 pressure points) and if she is, would love her thoughts on it....

You both have your hands full... sending the infamous huggles to help the cause.

Phyl

[Gennysmom]

Phyl, Amy (Raydean's daughter) is on Lyrica and it's working wonders.  They are messing with her meds right now as she's presenting several AID symptoms, and they're still not sticking with one diagnosis, she probably has 2.  So they may change it, but it's done a lot of good.

[ppearl214]

Thanks Kathleen... Raydean had told me the same thing about it... as I've heard good and not-so-good (my mom is on it as well).  Will continue to survey how folks are dealing with it... not like I'm not already an major shareholder in my local pharmacy.

thanks again,
Phyl

[Brendalu]

My doctors have officially diagnosed me as : chronic fatigue syndrome, fibromalaysia (sp)  and post raumatic stres syndrome along with severe depression.  I was given Cymbalta at 120 mg.  Can't take Lyrica because I'm allergic  to some of the stuff in it.  The Cymbalta helps with the pain.  No thyroid problems..............................yet
Hugs,
Brenda

[Omaschwannoma]

Just read this one and found it interesting as I too had my thyroid checked, twice,  years b4 tumor diagnosis. 

What I would like to share is years b4 thyroid stuff I became massage therapist and during our schooling we learned about fibromyalgia symptoms, testing for it, etc.  I had body aches and saw rheumatologist who put me on a few different meds that only made me swell up and didn't take away pain.  So, out of frustration I went to fribro symposium where different doctors talked about what they have found to be a cause and what they do for txing their patients.  I talked with patients who were on combinations of meds and they still were saying "Some days are good and some days are bad."  One doctors talk said he thinks cause is the megalovirus and treated patients with heparin and they did well, unfortunately, as he stated you cannot stay on that forever.  He used coumadin for long-term relief.  Didn't want this regimen so sought the guy who spoke about specific diet.  Went to see him and was put on the "candida diet", esentially he thought my system had a build-up of yeast and this was causing the pain.  Usually 6 weeks does a world of good for most, but me.....I'm special and stayed on it for over one year!  Interestingly enough it got me off my inhalers that were prescribed for me (dx severe allergic asthma, but still had those weird moments of sudden throat closing?! so still carried epipen), lost weight, pain still there. 

Now here's my other bit of interesting info.  After a few more years went by after my AN dx and tx, a friend called and told me she had been dx'd w/fibro.  I sent her my info from that symposium and interestingly enough as I perused the papers I found a statement that read ".....another cause for fibromyalgia is brain tumor!"  So, after my AN removal my fibro symptoms have mysteriously disappeared and so have my severe allergic reactions (threw away epipen), all the foods & meds I would list in the "what are you allergic to" column I no longer fill in. 

[Jim Scott]

Jim, fast question please... is your wife on Lyrica? Been investigating it (I got 17 out of 18 pressure points) and if she is, would love her thoughts on it....

You both have your hands full... sending the infamous huggles to help the cause.

Phyl

Hi, Phyl:

Thanks for the huggles.   

My wife (Tina) has just been switched to Lyrica (replacing Neurontin) by her rheumatologist.  He's slowly introducing it into her regimen (75 milligrams daily, for now) and so far, she really hasn't noticed any difference - but we realize it's too still a bit too early to realistically judge it's efficacy.  Of course, we're optimistic due to positive reports we've read regarding this new pregabalin drug.

For any other Fibromyalgia sufferers reading this, I would suggest they try to locate and join a local support group for more information.  There are many Fibromyalgia-centered websites that also offer information, including new drugs and therapies.  Here is one: http://www.fmnetnews.com/. 

As with AN complications, 'Fibro' is a challenge but can be managed.  My remarkable wife has been dealing with it for 15 years, along with back problems (4 separate surgeries in 10 years), Crohn's disease and  a few lesser maladies.    She doesn't allow these to constrict her life and she simply deals with all of them, as necessary.  Her positive, intrepid attitude helped me recover from my AN surgery quickly, as she set such a great example of how to deal with medical problems.  Although she never asked for a thing, I knew she also needed my help around the house and elsewhere, which also motivated me to 'get back' (to normal) as soon as I could.   

I trust this post is helpful to you, Phyl, even if I cannot offer a comprehensive assessment of Lyrica quite yet.  When I can - or more correctly, when my wife can - I'll be happy to pass along any useful information to you and anyone else who may be interested.

Jim

[ppearl214]

Jim,

You (and Tina) rawk! Thank you!!!  (pls consider the next brunch... I'd love to meet you both).

with dr guidance, I was off Neurontin as of 4 mos ago (got as high as 600 mg/day)  Interestingly enough, my pain levels lessened once I weaned off and now, my pain levels are fairly tolerable (from headaches to all over body aches, except for my lower back arthritis, due to ortho-surgery over 25 yrs ago, so that's a whole different animal onto itself).

I'd love to hear more as to how Tina does with it... I know it takes time for it to build up in the system before it begins to do the trick... please please keep me updated.. .and thanks for the FMS link. I was made aware of local FMS support groups, but haven't checked into it yet as other medical yee-haws have my current focus..... but, not ruling it out... I know what this AN website has done for me (ok, not just the ulcers, folks!) but I am a firm believer of proper support with like-minded (same issue) situations.

Jim, thanks again.. and one more huggle.. just cuz

Phyl

[Raydean]

According to Amy's Doctor it's fairly routine for the Doctor to prescribe Lyrica and a anti depression drug such as Cymbalta for the treatment of Fibro.     Lyrica was FDA approved for Fibro last June  ( first one approved for Fibro) and some insurance companies are dragging their feet in covering Lyrica as it is a really pricey drug.  Amy wanted me to share with you that it's important that you check with your insurance company to see  what level (mg) or if they will cover this drug and what the patient may need to do in order to have this drug covered.

In her case the insurance co had a criteria that had to be met and X  amount of pills were covered.
Since it comes in different milligrams it took working with her doctor so the right level was prescribed without exceeded the limit. I would consider asking your Doctor for a sample pack "freebe" to try it out.  At times when she has exceeded the "allowable amount" her Doctor has been really good at giving her sample packs to insure that she always has enough.

Amy's first week on it was rough, she had major sleep distrubances, In fact  she almost gave up on it that first week due to the way it made her feel.  (150mg)  It hasn't been a cure all for her,
but it has greatly added to her quality of life and allows her to function on a "more normal level".


Often times as mentioned in Jim's and Brenda's  posts a person can have multiple auto immune diseases. I think you're more at risk to develope another auto immune disease if you have one.
i wonder how much of this is genetic, recessive genes?  Or maybe we're more aware

Phyl,  In the past Amy took neurontin,, but it wasn't working for her.

Best to all
Raydean

[ppearl214]

Raydean,

thank you SO much for that response... and please thank Amy for me as well...... still sitting tight as I'm in the process of cleansing myself of all meds (Rx) to clean out my system....... this is great info to know and I appreciate you sharing it with me/us.....

As always.... huggles to you and Amy and Aaron and all.
xoxoxoxoxo
Phyl