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Posted 9/8/2008 11:00 PM (GMT 0)

Hi girls

I registered a while back and posted for a few days, but as I haven't officially been diagnosed with fibro, I feel a bit of a fraud participating.  However, I am lurking on here nearly every day, taking comfort from your strength and humour.  I identify so much with what you are living with day to day.

I am feeling rough, and very low because of it.

I have official dx for TMJ, chronic candida, vulvodynia, vulvar vestibulitis, cervical spondylosis, IBS and irritable bladder - but all under separate docs!!!!  My general doc has prescribed amitryptyline for pain relief and help sleeping, in addition to the diflucan (fluconazole) I am already on for candida and citalopram for depression & anxiety.  I've put on loads of weight since starting the amitryptyline a few months back and have gone from a petite waist size of 28" right up to 35" and am struggling to get clothes that fit my waist without hanging off my hips & butt!!!!  Really adds to the depression for a previously svelte 40 something.  .... and I'm so hot & dripping with sweat!

Last couple of weeks, I have felt so weak and in so much pain that I am utterly fatigued.  I work full time and last week, I decided to take Friday off as a personal day.  Just couldn't get through a full week. I slept from 22.00 Thurs right through to 16.00 Friday and then felt mad & cheated that I had missed my day off!  Today I have gone back to work and have come home with pains in my back, shoulders, elbows, knees, ankles, and so so tired I can hardly speak.  I couldn't for the life of me work out how to cook an evening meal.  Hubby had to fend for himself (awww, shame!!!!) I could be tempted to reach for the red wine to blot it out, but can't tolerate it cos of the meds - I would never get up for work tomorrow!

Don't know what to do next.  None of the specialists I have seen have attempted to connect my ailments - they are all just interested in their one little piece of me. When I gave my general practitioner a list of all my ailments, she just said " so you have poor day to day quality of life" and prescribed the amitryptyline.

My doc, I'm sure, thinks that all my ailments are due to depression.  They sure all cause depression.  I just feel that I've been to her so many times over the last couple of years, she will think I am trying to find an alternative for the sake of it.  How do I broach the possibility of fibro without her thinking I'm a hypochondriac?  Seems like chicken & egg to me - which came first, pain conditions and then depression, or depression lead to pain conditions?  Have been through stressful divorce from alcoholic husband of 20 yrs, moved home twice in a year, remarried and inherited new stepson etc etc, hassle from ex hubby who still torments my 2 lovely girls etc etc

Oh, quit moaning Nicky!!!!  Any advice, help, pointers in right direction would be so gratefully received.

Feel better for venting and hope you all don't mind!

Love to all

Nicky (UK)

Posted 9/8/2008 11:09 PM (GMT 0)
Nicky,

You are not alone. I have not yet been officially diagnosed with Fibro either. And sometimes I feel like a fraud too, for the simple fact that it isn't official yet. I have been diagnosed with IBS, TMJ, Major Depressive Disorder, Obsessive Compulsive Disorder, Social Anxiety Disorder, and a few other anxiety disorders. I take Hydrocodone, Zoloft, Xanax, Robaxin, and Lyrica.

It is always nice to know that you are not alone, so don't feel like you are. And don't feel bad for being here. I am a newbie here, and I just take comfort from the fact that I am not alone in the way I feel. There ARE people out there who understand, even though sometimes it feels like no one in the entire world could possibly understand. There are actually other people in this world who suffer, just as you and I suffer. Take comfort in that. And don't feel like an outsider, because I have not been officially diagnosed either. *hugs*

Rach

Posted 9/8/2008 11:19 PM (GMT 0)
Hi Hypo!!!!

Thanks so much for speedy reply - I don't feel so alone now. I really should go to bed as I'm in the UK and it is past midnight. I have to get up at 6.45 for work, but I sleep so badly I dread going to bed, tossing, turning and jerking all night, and grinding my teeth to boot!!!

Hugs back

Nicky
Posted 9/8/2008 11:25 PM (GMT 0)
Take care of yourself Nicky, and try not to dwell on tossing and turning. Turn on some soothing music, it may help.

Posted 9/8/2008 11:26 PM (GMT 0)

Nicky, first of all, Welcome to the forum. Pls don't feel like a fraud for hanging around, this is how you can learn to 'arm' yourself for the dr. visits. lol. On the first page there is a section up top called Fibro 101, read thru all that, it has some great info, there is a list of symptoms for Fibro, print it out, ck off your symptoms or use a hi-lighter, bring it to your dr. I had to do this w/ my dr and tell her I believe I have Fibro. She was hard to convince at first, so I had to put it in black and white. She then told me she thought I had Fibro, and wanted me to go to rheumy to confirm dx.

A lot of the symptoms you mentioned go hand in hand w/ FMS, and when you have all that stuff going on and no real validation, it is very depressing. For all their education, some drs. do not see the 'big picture'.

This is a good place to come to learn, to vent, to share, and yes, even laugh. Read over some of the earlier posts, too. Keep posting, it does help to get it out of your system. Also, read over the older posts, too.

Hope you have a good evening. Hope the rest of the family can chip in and help prepare dinner, it will make it easier on everyone to share the work.

God bless.  Alice.

Posted 9/9/2008 12:21 AM (GMT 0)
Hi, Nicky, and welcome back!  Good to see you.  There is a lot of good information on fibromyalgia on the Fibro 101 thread.  As Alice said, print some of that out and take it to your doctors.  Also, you can Google Fibromyalgia and you will get a ton of information, too.

 

If the medication is not helping you, why are  you continuing to take it?  In my humble opinion, anything that is putting that much weight on you in a few months should be stopped.  The weight will cause other health problems, including diabetes and blood pressure problems.  If I were  you, I'd sit down with my doctors, armed with information, and discuss the direction  you should go.  Let them know you want to try a different medication since the medication you are taking is making you gain too much weight.  You are not being a hypochondriac just because you need a correct diagnosis.  You aren't asking for narcotics.  You are just asking for help!  There are other medications they can try on you that might work a lot better.  Remember, YOU are hiring the doctor to take care of you.  That makes you the "boss".  Doctors are not gods, even thought some think they are!  eyes    Talk to them, like you are talking to a friend.  That's what I do and it takes the stress out of the visit.  So many times, patients are afraid to talk to the doctor for fear they won't help them.  There are plenty of doctors out there that are willing to help and understand their patients.  That's the type of doctor you need to have.  I hope that's the type of doctor you do have.

I take ibuprofen (with food), Tylenol, and malic acid/magnesium supplements for my pain and fatigue.  All of this is over the counter.  Perhaps, see if these would be good for you to try.  You have to start somewhere.  I talk to my doctor and my pharmacist before I try anything.  If your doctor isn't approachable, then you need to find another doctor. 

 

Don't feel like a fraud by participating without a diagnosis.  There are many members on here without a diagnosis.  After all, it seems to take a long time to get one!  shocked    You sound like you have fibro and you need support so we are here to help you.  That's the whole point of this forum.  So, join in!  We love seeing you.!

 

Sherrine

Posted 9/9/2008 7:45 AM (GMT 0)
Mine was put down to depression for a long time.  vicious circle pain makes you depressed and the more depressed the more pain but they have it backwards.  The pain comes first ,then the depression. mad mad    sue2z
Posted 9/9/2008 12:42 PM (GMT 0)
I have had MDD for many years now, since I was in the seventh grade, and I was never in any physical pain. Now I am in pain, which makes me depressed, which makes the pain worse, which makes me more depressed. Sometimes depression can cause pain, but most of the time there is something else going on. A lot of doctors want to chalk it all down to depression because they believe it is all in our heads, and sometimes they just don't want to spend the time trying to figure out if there could be something else going on.
Posted 9/9/2008 1:48 PM (GMT 0)
Welcome friend! You will find help here. You will find information here. You will find compassion here.   I have to agree with Sherrine. Less is more when it comes to medication. I'm off all the prescript ion meds except thyroid and not missing any of them. I have a problem with most Drs but I've found a DO that actually listens to me. Search until you find a Dr who is on your side. Ask your friends and relatives who they recommend. A good general practitioner who can manage all your health care will take an enormous weight off your shoulders.  I actually feel encouraged after a visit with my doctor. I have built an open relationship with him over the years. He doesn't pretend to know everything and I can trust him to send me to a specialist if I need one. Stay in contact with us....knowledge is power and understanding ears are priceless. You are going to have better days.
Posted 9/9/2008 4:41 PM (GMT 0)

Hi Nicky and Welcome!

Sounds like fibro symptoms to me also, and you are welcome here anytime!! I was fortunate to have found a good Dr. and this great support group right away. I would continue to seek out a Dr. that knows something about FM instead of just making a statement and prescribing Amitryptyline. Thats not good enough. 

I also grind my teeth at night and wear a mouthpiece. Does help a little. Sounds like your quality of sleep is poor also- another symptom of fibro!

Just do the best you can each day and recruit family to help until you can get this figured out. The group will be here for you! GamJill  

Posted 9/9/2008 10:51 PM (GMT 0)
Hi there

Thanks all so much for the wonderful support, help advice and most of all, understanding

I've just realised that I'm misrepresenting myself with my signing in name "Nicky40" cos I'm actually 43 now!!!!  Oh well, who's counting? :-)

I've read lots of the info on Fibro 101 and it's been really helpful.  I've also read through quite a few recent postings and am particularly interested in the personality types that a lot of us seem to be.  I did some research into vulvodynia & vestibulitis when I got that shock diagnosis - I say shock because up till then I thought it was just the candida that was causing all my pain and it took some coming to terms with that it was a more permanent pain condition and wasn't likely to get better very easily.  Anyway, turns out this condition is especially linked to personalities like mine - perfectionist tendencies, people pleaser, high standards moral and otherwise, being a bit of a control freak when things aren't just the way I want them and being internally irritated whilst smiling on the outside etc etc.  Seems from what I've picked up that many of you are similar

I seem to be in a "flare" right now as a result of spending three hours shopping for clothes (expensive, this putting on weight lark) - 10 DAYS AGO - if that doesn't sound too ridiculous.  Next day I could hardly move, my arm muscles were so sore as though I'd done a workout, just from carrying a few bags.  My neck had seized up so I couldn't turn my head, I was utterly drained, fit for nothing and then it went further downhill from there with the IBS, vestibulitis and irritable bladder all coming out in sympathy over the next few days.  I'm only just coming out on the better side.

Sherrine, I felt emotional when I read your response.  Your warm welcome is really humbling.  I think you are spot on with your advice - every time I go to the docs I don't tell her enough and just keep blindly taking more pills.  I need to put more effort in and be more assertive on my next visit and I needed a wise woman like you to tell me!

Thanks so much to all who have taken the trouble to respond - I can't tell you how much it means, and if I can be of help to anyone, I will give it gladly

Regards to all

Nicky

 

Posted 9/10/2008 12:32 AM (GMT 0)
Nicky, I think you will find it really interesting that nearly all of us are perfectionists!  Yep!  We have problems letting go of the perfectionism because it doesn't work with fibro.  I used to drive myself, and everyone around me, crazy trying to do everything and keep everything spotless.  Not any more.  My body pays too big a price for that.  I pace myself.  I get things done, but not in the time frame that I used to.  And, even though my house isn't as clean as I would like it, it is still cleaner than a lot of my healthy friends' homes!  I have a sign in my kitchen that says, "If you've come to see me, Welcome!  If you've come to see my home, Make an appointment!"  I l-o-v-e that sign!  tongue

 

Sherrine

Posted 9/10/2008 2:34 AM (GMT 0)
Hi Nicky and welcome. Another ex perfectionist here. Now I look back at all the time I wasted in my life with the perfectionism and think "what was I thinking"!!!

 

You have been given so much great advice already. In today's medicine I believe we have too many doctors for our bodies. Yes, specialist are needed but they don't get to know the whole body. My GP that I have been seeing for about 15 yrs was the one that dxd me after doing test for months and finally having a full blown flare at the time I was seeing him. He put it all together in minutes then.

 

For me the depression problems and anxiety came long before fibro.

 

luv and hugs

Marlee

Posted 10/15/2008 5:12 AM (GMT 0)
Nicki,

 I was doing some research on lyme disease symptoms and somehow a posting of yours from 2007 came up. In it you listed a variety of symptoms you were having, which sounded alot like Lyme symptoms. Have you ever been tested for Lyme Disease?

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