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I'm back, and way worse
11 Replies
mimosette - January 11

Haven't been here in a while. Wanted to give the new med (Pristiq) a chance. It did drag me out of the worst depression I've ever been in (really scary!), but my fibro has gotten much worse than I ever imagined .
When I hurt before? I only THOUGHT that was pain. This is nigh on unbearable pain. The only pain med that takes the pain away is codeine.....which makes me throw up and feel panicky.Nice trade, huh?
Early this morning, after about 2 hours of sleep, I woke up crying in pain, and my husband got me a codeine pill and stayed awake with me until it worked.
I had the appt with the rheumy who specializes in fibro Dec 6, and DD and I both had a nasty upper respiratory infection, so I missed it. We were at my reg.Doc that day getting shots for that.
My parents and sister still think the cure is for me to "get out of the house and exercise more".
Yeah, who's gonna come and help me out of the bed? Dress me ? Fix my hair ? Wash me some damn clothes?
I feel I have dumped all of the housework on my 17 year old, who is very good to me.But I still feel guilty for asking her to wait on me hand and foot.
Can't take much more.

 

ptalana - January 11

mimosette, wow I'm so sorry to hear what you're going thru. Fibro is such a strange beast, so hard to get a handle on!!!! I can so relate to the unbearable pain, I've just accepted that my meds aren't working for me either. Been trying to take as little as possible, but there has to be more to life than hurting??!! I've never heard of Pristq is it for depression only? Unfortunately I can't tolerate many anti-depressants, codeine, nor any of the meds specifically for fibro. And what a trade either being in pain or throwing up, it just sucks!!!!
Most of my sisters don't even ask how I'm doing, nor take any interest in finding out what fms is. My hubby gets tired of hearing about the pain, so I don't feel comfortable talking about how I'm feeling. So I understand what your saying about your family's suggestion, needing to get out and exercise. They can't possibly understand when they don't feel what we feel.
Thank God for your hubby and your daughter who both seem to get it. Guilt I think should be a four letter word, it permeates a lot of my day as well. We as women tend to wear it like a sweater, but this sweater is old, has holes, and itches, we need to toss it!!!!! But as women we're strong and able to handle so much more than we give ourselves credit for, thank God!!!!
Are you taking anything specifically for the pain, other than codeine? Have you tried the nerve block injections? I'm waiting for ins to approve coverage so I can start these. I take between 6-8 percs a day, pantaloc, flexarol, vitamin D. This is not working for me, so back to the doc I go, just can't wait any longer for ins co to approve injections. Hang in there mimosette, we'll get our meds right. Remember you're not alone!!!! Feel my hand in yours, a light squeeze we're gonna make it:)Patty

 

white chocolate - January 11

Hi Minosette, Like you I have my partner who helps me and my daughter who is coming up 23 next month. Most of the time they think I'm just moody but it's my pain that makes me irritable. My daughter understands more as she works in the care profession but when I'm weepy and in pain I feel such a burden to her. Deep inside I know her seeing me so bad isn't right and it feels like our relationship has swapped places with her caring for me and I don't like it. I carry an awful amount of guilt on my shoulders.
As far as the rest of my family goes, my mum has been a lot better trying to understand it and help, although this is from a distance as we don't live close & she's not in the best of health herself. Last month for me things were really tough and when I was at my worse one night with pain and fear, I put my feelings on paper & emailed it to her. For me it felt like letting of steam, I knew she wouldn't discard what i was telling her. I also let my partner read the email and he's been far more understanding since. i have 3 brothers who have no idea what I'm going through even though I work a couple days a week for one of them! Only a person with Fibro will understand & take the time to listen & be there. That's why I know I can come here and it helps a great deal. Some days I can only read what's happening to the rest of the guys on here. Other days I have the energy to try & help.
Do what I do & come to this forum. It does help and it gets me through.
I read what ptalana said & her bit at the end bought tears to my eyes & a lump to my throat. We're going through this together and we will make it..together.
You take care..love & gentle hugs xxx

 

iliveinpain - January 11

Hi mimosette, I can totally relate to your feelings. I too feel that I'm currently going thru the worst fibro-flare I've ever had. I'm unable to tolerate codeine, because I'll throw up from it. That is a pretty bad trade off. But it seems no matter what I do, I get these incredibly bad bad days and I wonder sometimes just how bad it can possibly get. I feel sometimes like I'm dying from something that has been missed, misdiagnosed, etc., and I get extremely depressed. I feel sometimes I only go on for my husband, who is a wonderful and caring partner to me who I think understands, or at least is sympathetic to my daily struggles. My family however, my mother and brother, completely disregard my feelings. My brother especially, who I always felt was my best friend in the world, has completely disappointed me in this. I dont' think he cares to understand or even believes it, so I just try not to dwell on that, and go on as best I can. The exercising is a joke, since I can't barely walk because of lower back pain. I do some gentle stretches that seem to help very much, because we do have to try to remain somewhat mobile. I'm at work right now sitting on my heating pad and just popped some pain meds. I also faxed my doctors office asking for more medication and am currently trying to find a new primary care physician, because the one I am going to doesn't really "get it" when it comes to this disease. Gentle hugs to you... know at least that you're not alone, and we are always here for one another, I find that helps me very much...

 

chela - January 14

Hi,

Well I'm a little late in posting. But I feel your pain. I do not know what is worse the "actual pain" or the pain of realizing that you have to depend on others. You are blessed to have your husband and daughter both help you out. My husband as your does help, but I know that sometimes it becomes a burden on him even though he does not tell me. As I posted earlier, the weekly injections have help a lot. I went from considering only working part time to almost being back on track. Don't get me wrong I still have my bad days but they have helped me cope better. I had tried Lyrica Cymbalta, Tramadol...etc but they made me feel too sleepy and weird. So I know where you are coming from....hang in there we are with you.

Chela

 

stephanyb11 - January 14

mim i can totally relate!!! my family tells me the same damn thing...exercise, move around more, scoop the walk, ect...well until they feel the amount of pain i go through they have no idea that those things are next to impossible for me to do!!! i am so sorry that you are worse!!! and i am glad that your husband is very supportive!! my husband is also extremely supportive...however my stepkids mom's have them convinced that i am "crazy" nice huh...so therefore they do nothing to help around the house, nor to help me...i hope that you can get to feeling better...prayers are with you!!!

 

Noca - January 15

What narcotics have you tried? Personally I like my Fentanyl patches. Since switching over to them from Dilaudid, my nausea is 10% of what it was before. My pain is also much better controlled since the drug is in my blood 24/7. Codeine is really a wimpy pain killer that doesn't do much. I take the equivalent of like 30 Tylenol 3's worth of Codeine in the form of Fentanyl.

 

Awesome1 - January 15

Terrible indeed mimosette!

All the meds that are highlighted in this forum has gotten my head spinning. It is a sure thing that FMS is a beast of its own. I had those aches and feelings before, and if I told you that Vitamin P is the key, that may sound wacky.

Unfortunately, we don't get to know the real cause and so we are simply taking medication that suppresses the problem or take Vit D because of some deficiencies.

Whether you know it or not, depression is typical of having FMS. However, RA and SLE typically menifest themselves as well because the source of this problem stem from one area. So, instead of dealing with it at the source, we are handed anti-depression drugs, and anti-inflammtory drugs that deal with the situation downstream.

In the mean time, look for the pharmaceutically graded Vitamin P. (This is not for dificiency) Currently, the medical arena has not embraced the efficacy of this awesome Vit. On the average one's ANA and ESR can be reduced by, at least, 46% in about 5 months. Significant difference will be noticed. Also, you could read Dr Hnat's results... ibetes.com/attachments/Hnat
_Endorsement_for_Mirac.pdf.


Hope this helps.

 

axxie - January 15

Hey mimosette, I feel for you, and I hate it when someone tells me to just move, I wish sometimes that I could just dream of one day where I have no pain, that would be swell. Gees, lets see, tylenol 3's are a dime a dozen, they are far worst for your liver. I also had that prescription at one point, and I would take about 3 or more at a time, the only thing it gave me, was this buz and no sleep. Did it help my pain, of course not, tried oxycontin, they work but do you ever go through the Dr. Jekyll and Mr. Hyde syndrom if you know what I mean.

Try moving from your bed, to the shower, is at best the best I could do somedays, so I can relate. Can the doctor give you the patch gees you are not going to kill yourself with it, but it can help you not feel the pain somewhat.

I hope you feel better my dear, it's a rough life, I know and we are all here giving you a hand up.

Sending you my warm and pain free thgouths, gentle hugs.

sandrivers

 

dkarssen79 - January 15

I'm sorry you are worse but this is a good place to come. I have found so much support and understanding here. unfortunately the father of my 2 year old and 4 year old and partner of 12 years was not understanding what so ever. I think the stress of everything he expected me to do since my dr put me on short term disability actually made things a lot worse. So i recently decided to move out. I now have an apartment where I live with my 2 daughters. It is extremely tough taking care of them and trying to function with all of this pain. My family is the same way they think more activity/exercise. Well I tried that this week and I'm left feeling worse today than I have in a long time. This is the best place for me. I find support, words of encouragement and people who actually understand! I'm sure your husband and daughter know how much you appreciate what they do so you shouldn't feel guilty. I hope that you have some time in the near future that you have some relief!

 

anna1 - January 16

hi.....i have just been diognosed with fm after many grueling tests.to say it scares me is an understatement..i have read alot about the condition,and to my suprise theres alot of us in so much pain...you are all right in comments about not being understood...im having difficulty in making sense to the people around me....pain/ they all think im talking a period pain...(if only)..lol...imiss the woman i was not so long back....the woman that cud paint,knock walls down,and be the mom i was....the strong character that was me.....i had a car accident,hurt my spine....they said it was whiplash,and it would go .....but it hasnt..and im not me anymore....im not depressed,because the docs blame it on that....im just a touch sad,that i wasnt like this before..the worst thing for me is the pain i wake up with,if i happen to lay on my front and sleep...the pressure points ie my knees and front of my feet are so painful i cud easily pass out....to think i use to catwalk...lol....i cant walk to the kitchen some days.....
and my hands....well i cud cry with the pain...
MY QUESTION IS....WILL I GET ANY BETTER GUYS?
OR IS THIS AS GOOD AS ITS EVER GONNA BE?
X

 

mimosette - January 16

I have never tried narcotic drugs....I am scared of them!

I just had a couple of "better " days. We have had the coldest days in Alabama this January since 1985, and I really think that triggered my flare.(it warmed back up some the last 2 days)

I tried the last few nights :Ambien, 1 Flexeril, 2 Aleves, Topamax, and 2 mg Xanax, and that may also have been what helped, as I actually slept! (my normal nightime meds are the Topamax, ambien,and Aleve)

the Pristiq is an antidepressant, but my sister is a pharm tech,and they attended a seminar this fall about Pristiq being used to treat Fibro, with some good results. It has certainly helped my depression, but what good is it to be not depressed, yet not able to move?

I had also gained a lot of weight on the different fibro meds like Elavil,Cymbalta, Lyrica, etc, and the weight is slowly coming off with the Pristiq.

I am so sore some days I can't even take my hot soak in the tub, as the pressure of the water hurts my skin. Nor stand clothes touching me, or the teeniest wrinkle in the sheets....

I guess it is time for the narcotics.

 

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