I never knew having Fibro could be so bad until… the other woman showed up in the in the middle of a pain attack. my kids call her my alter ego…and let me tell u shes mean an angry. when i can no longer deal with the pain she arrives. mind you i cant have pain meds or anti inflamatory meds…so keeping that in mind an having rods & screws put in my back and breaking my elbow, knee and a bone in my neck.Doctors telling me that there not gonna do anymore test cause there just torturing me…which i feel they should have let me b the judge of that…But any way my other half was born. So im really not sure how or what to feel. I am in constant pain, i sleep 3 hours every night.DOES ANYONE ELSE HAVE IT AS BAD AS I DO?
No and I truly pity you for only being able to get 3 hours of sleep, not getting any pain or anti-inflammatory meds, and having your docs refuse to do more testing on you. If I were in your shoes, I'd go to another doctor and ask for more tests. After all, those tests might find an answer for you. You absolutely have the right to know exactly what's going on in your body and what exactly is causing the pain.
When your alter ego shows up, it sounds like its time for you to ramp down the activity level and be as low key as possible. Rest or even sleep if you can. Lack of sleep alone can bring out the mean. So can doing too much. I strongly advise you to build in more rest time. Can the kids do some of the housework? Can you minimize some of it, for example by using paper plates and disposable cutlery in order to not spend time washing dishes? Can you buy premade meals? Can your kids start the meal and you finish it?
I do understand how fibro can really twist our personalities due to the pain. But do try to remember that the anger you show to your children today may well be internalized by them so they show it years later, as might their kids, and their grandkids...Try your hardest to give them your best, even if you have to send them out of your room regularly. Kindness truly IS the best gift you can give them while harshness can last a lifetime.
Please do continue to read the threads here as there is so much to learn from them.
Gentle hugs,
Petunia Girl
Dear Liss,
There is quite a bit of discussing falling lately! I think they are right to try to get to the bottom of this, making sure they are not missing something, plus autoimmune is difficult to get to show up, and then only about 25% of the people who suffer have it show on bloods. What else was suspected besides Parkinson's. MS perhaps? I have already had 3 brain MRI's looking for MS or SLE. My best friend suffered for years, one day she asked me to drive her to Baltimore to see and eye specialist, and she was able to finally diagnose her with MS. She takes a shot weekly, it helps her with just about everything but the tiredness, though once in a while her eyes will bother her. Autoimmune diseases always seem to come in groups, can't ever just get just one!
My heart goes out to anyone who fell to the point of rods and screws in their back! Whew! I think the testing is very important, sounds like you need a break though. Tell them to think about it for a while and you keep a running list of symptoms, no matter how insignificant they are, to turn in each visit.
I hope that you get some much deserved rest, but I also hope they check everything and keep an eye on you. I hope that one of the Drs you are seeing is a Rheumatologist, and that you see them on a regular basis.
Wishing you well, so very sorry you have had to go through all of this. You bet there are 2 personalities at work within us! Having intractable pain can really bring out the bitch, I know! I am so deeply sorry that you are going through all of this.
Love and hugs,
SK
SK yes they where looking into MS. I told the doctor to prove to me that i dont have ms…He gave up testing me. I asked for a lumbar punch and he said no. The rhuematologist acts like she really dont want to treat me. But after all of this there is one of my doctors who doesnt believe any of the diagnosis. He believes its MS. & TO Petunia Girl I understand what your saying but both my kids are grown there in there 20’s
Just read this in my mail box,and thankyou. I thought it was me going mad,I have found that I have a second person especialy at night,when I cann't get to sleep,or i get to sleep and my husband wakes me up by mistake.
It's nice to know I'm not going made,but it is scary because I cann't control it.
hugs.
A few possibilities of things to look into. I would go to a hormone specialist (a specific gyn doctor). also organic brain syndrome can do that. He could be that a chemical changes taking place that is causing the pain and personality changes all the same time.
I shouldn’t reply from my cell phone. Autocorrect is awful. sorry.
I have been dealing with my "other person" for quite a while but i had no clue why untill i found out i had fibro last month why. I always figured it was my neuropthy getting to me or that i am just an emotional person. I turn into a competly different person when the pain gets bad and i am mean, angry and extremly short tempered and i fell horrabul for it but most of the time i dont even realize im doing it. I feel like im living in my own little world somethimes, i overthink or obsess about anything and everything, im starting to realize i have been doing it for a long time as a way to focus on something other than the cronic pain and overall horribul feelings. I know it makes it worse and i make myself feel completly cuts
Debdrake My other person showed up because of the pain amd the fact that im not on any meds nor allowed to be. So i suffer. But Im glad Im not the only one that has another person.
Thank you everyone
Paula & CassLynn and to thers that are out there with this second personality.We dont mean to be mean and nasty with this other person and alot of times dont realize when they show up. I know its hard for me to. Especially for me because i lay and cry and my family will ask what can i do… The answer is NOTHING cause they actually cant no one can. I dont know if anyone else is as bad off as me or if my case is just so different cause i cant have meds. So i do apologize to everyone if i seem angry…i try hard at not to be. I definately enjoy all of you alls support an convo.
Liss,
IMHO you need to make SLEEP your number one priority. I swear, once you are able to login regular ZZZZZZZZ hours, the others things are easier to manage. Have you been to a sleep neurologist? Do you have sleep apnea? I do and once I started using the CPAP machine, it immediately helped me get to sleep and stay asleep.
Start making sleep your number one priority even if it is you and your doctor exploring muscle relaxers you can take at night that knock you out. Many years ago, I accidentally discovered that I could not take the muscle relaxer ZANAFLEX during the day because it knocked me out. My doctor and I put two and two together and I started taking it as part of my regular sleep routine. About an hour before I go to bed, I take the Zanaflex. The minute I start to yawn, I climb into bed and call it a night. There might be a medicine like that out there for you. Just a suggestion.
Best of luck and sweet dreams!
Thank you. I have a sleep test scheduled…but i have had insomnia for 25 yrs. there are times im up for 5-6 days an sleep for 6 hrs then be up another 4-5 days.
I think someone in the discussion mentioned perhaps a trip to the gynecologist....I would recommend that as well. While the pain and sleeplessness can be unbearable and might make you moody there could be some underlying issue perhaps hormonal. While we were investigating what was wrong with me my doctor discovered I had Polycystic Ovarian Syndrome which can effect hormones, blood sugar, menstruation, etc.
It's sounds to me that overall you should get yourself a new team of doctors. If you have rods and screws in your back and have had that many breaks it is no wonder you are in pain, Fibromyalgia or not. You should be being monitored more closely by people that care. I wish you well and hope you are feeling better soon.
thankyou Liss,I am the same as you I cant have meds either now as because of them my Liver is ba
I have had extensive blood work ups and pee test done and all came back normal even my thyroid. I have been checked for vertigo and all clear ad far as me seeing a gyn i havent had those parts for 10 yrs. They been checking my hormone levels for awhile cause they took those parts at a young age. But thank you for the
Options. Thats what fusstrats my main pcp cause there running out of options.
I DONT HAVE THAT PROBLEM NOT BEING ABLE TO SLEEP I DID HAVE A PROBLEM BECAUSE THE RHEUMI PERSCRIBED PREDNISONE FOR THE I TOO ACT DIFFERSNT WHEN I. I. PAIN I TEY TO BE NICE TO PEOPLE BUT SINETIMES I TISSUE SWELLING AND PAIN DIDNT BELP BUT I COULSNT GO TO SLEEP UNTIL 11-11:30PM UNSTEAD OF 9PM I ASKED THE DR TO INCREASE THE A.ITRIPTYLINE FROM 25-45MGS DIDNT HELP MY SISTER SAID TO TAKE BENADRYLL TO SLEEP HAD BOTH STILL COULDNT SLEEP I HEARD ON FR OZ IF YOU HAVE TROUBLE SLEEPING DRINK CHERRYJUICE THE FIRST NIGHT SUCESS ASLEEP AT 9PM XRINK IT 1 HR BEFORE BEDTIME
I DO ACT DIFFERANTLY WHEN IM IN PAIN I TRY TO BE NICE TO PEOPLE BUT YOU CANT IF YOURE IN A LOT OF PAIN PEOPLE AT WORK AND CHURCH UNDERSTAND EVEN THOUGH TBEY DONT HAVE IT ITS IRRITTING TO TRY TO DEAL WITH THE PROBLEM AND APOLOGIZING BECSUSE YOU DONT ACT TBE WAY OEOPKE EXPECT YOU TO ACT YOU DO AND SAY TGI GS THAT PEOPKW WITHOUT FIBRO WOUKDNT DO OR SAY IVE HAD TO APLOGIZE OVER A D OVER TILK IM BLUE I. RHE FACE APPARENTLY I HURT MY DADS GIRKFRIENDS FEELINGSSE ERAL YEARS AGO I TRIED TK EXPKSIN TBAT IT WSSNT MY FSULT TBAT I DIDNT HAVE ANY CONTROL OF WHAT I DID OR SAID DAD SAID TBAT WASNT ACCEPTABLE AND SHE WALJED PUT OF TBE HOUSE CRYI.G HE WAS GOING TO FI D HER AND BRING HET BACK IF SBE EOUKD A D ID BETTER LRAY SHE DID OR I WOUKS BE IN TROUBLE I APOLOGIZED TO HIM 12 TI.ES SHE CAME BACK I APOLOGIZED 12 TIMES TO HER BUT I DIDNT DO SNYRHING WRO G I WAS JUST TALKING SOGTLY TO TGE DOG I GUESS I EAS TALKING LOUDER THAN I WAS IT WASNT MEAN NASTY MADE UP OR RUDE IT WOULDNT HURT ANYONES FEELINGS AND I GUESS SHE DID LINE IT IT WAS TBE TRUTH I DONT REMEMBER WHAT IT WAS ABOUT BUT IF ITS TGE TRUTH S D NOT HURTFUK AS MY. NEIGHBKR AN. WOULD SAT LETS FACE IT ITS THE TRUTH AND TBEN SHE SAID TO ME HOW WPULD YOU LINE IT IF I HAD YOUR DOG PUT DOWN THAT WSSNT NICE I SHPULD HAVE GOBE TO THE ER THAT CAUSED THE WORST FIVROFLATE IVE HAD IF I BAD GONE ID CSLK BOTH THE SISYETS EXPMAIN THE SITUATION A D WBAT HAPPNED IF THE XR WOULD HAVE SAID NO STRESS NO WKRK FOR 1 WEEK ID HAVE TO COMPLY WHAT ABOUT RBW ZTRESS WHAT EOULD I DO TO KEEP FROM BEING SU NECTED TO TBE STRESS I WOULD HAVE TO REMOVE MYSRLF FROM DTRESSFUL SITUATIOBS ID PROBABLY GO TO DES MOINES 3 HRS AWAY YOUDE PROBABLY SAY ITS NOT YLUR FAULT EHY SHOULD YOY MWAVE SHE CAUSED IT AND SHOULD LEAVE WITH ANYONE ELS TBAT EOULD BE FI E BUT NOT IN RHIS CASE THE 2 OF RHEM WOULD SAY YOU CAUSED IT SND SHOULD LEAVE IT WSSNT MY/HER FAULT ID LEAVE IT WOULD BE EASIER ITS MORE IMPORTANT TO KEEP PEACE IN RHE FAMILY. AND ID GAVE A STESS FREE ENVIROMENT EVERYINES HAPPY BUT IT DIDNT COME TO THST IF IT EOULS HSVE TBSTS WHST EOULD HAPPEN ITS GREAT TO HSVR A GREAT GROUP OF PEOPKE. WETE HWRW FOR WACH OTHER IM VERY BLESSED TO BE SURRRONDED BY SUPPORTIVE PEOPLE HAVE A GOOD EVENING E
Hi Liss,
I'm sorry I don't have any other advice for you. You really do have it bad, and not being able to take medications must be awful. I don't take anything regularly but thats my choice, I'm not in terrible pain permanently and so can cope with heat packs, massage and relaxing.
I don't know if I'm allowed to say this but are you allowed (medical marijuana), I don't have personal experience of it to comment but I did watch a few programmes on it, I thought it seemed good and side effect free. I know it's a last resort option.
Sorry if that offends anyone, I am completely anti-smoking and anti- drugs, but it seems to be helping some people.
xoxo
Wow, great advice.
+1 in favor of everything said here.
Pain can bring out a lot of anger, frustration, despair, and more. I know it does for me when it flares. I also have spinal injuries, but no rods & screws...yet. It is the greatest pain I have ever had. Things I do, which you may have done already, is to consider a pain management specialist, and when told you can't have pain meds, ask why. I get a lot of information when I ask that question, "Why". The second question, if they have a good reason is, "Is there an alternative medication which could possibly help?" These questions make the doctors accountable to me, which gives me a sense of control over the situation. Understanding relieves some of my stress.
Also, there are many kinds of pain, and many kinds of pain meds. A standard pain med, as we are used to them, does not address neural pain. I had to learn the "vocabulary" of pain in order to describe it more accurately. For me, I use Gabapentin (generic neurontin) for neural pain, Diclofenac sodium for arthritis, baclofen for muscle spasms, and a walker. Anything that helps us straighten our balance leads to structural positions which relieve pain. I realize that diclofenac is off limits for you as an anti-inflammatory, but asking these two key questions is a starting point in regaining a bit of control over the situation. Having had spinal surgery, it is reasonable to ask why they won't give you a neural pain reliever for your spine, such as gabapentin.
A sleep test did wonders for getting help in pain relief for me. I have 0% REM, the stage in which things repair, and obstructive sleep apnea. I am 59 and on Thursday I will be having surgery to fix several problems in nasal structure. (I have NEVER breathed through my nose - ever!) When they did the sleep test, it was recorded as proof that spinal pain was breaking my sleep and causing me to lose 4 hours of sleep in the middle of the night. The spinal pain made muscles jump so bad it freaked out the sleep therapists! Finally! Proof! I have learned to sleep 3 hours, sit awake for 3 hours in pain, then sleep for 2 hours. I come close to your level of sleep. I am one who dissolves in tears without sleep. Pain makes me cranky, restless, and hard to live with.
Ask those two key questions, do some reading of descriptions of different kinds of pain so you can describe what you are experiencing. Also, give them an estimate of the severity of pain by using a 1-10 scale, with 10 being unbearable (needing hospitalization.) You can get several descriptions online of pain scales, and I keep printouts to refer to when I don't know how to describe severity.
With the injuries and types of surgeries you have had, you have more than just fibro going on. I'm there with you, but with a few different details. You're not the only one, but you need answers, solutions, and assistive devices. I can no longer carry a purse or laundry, and I can't pull loads from behind (such as a rolling crate or roller bag). A walker lets me sit when I need to, and it carries my purse for me. Have you tried using a walker to demonstrate your need for relief? It's not just a tool to help us move around, it also gives us credibility with doctors.
I hope this helps. Your first question - does anyone else have it as bad as I do? - we sound similar. You do have it pretty bad, but some pain relief and a sleep test will help some. When they say no to pain relief, then ask what can be done to relieve the pain. Put the burden of solutions on them.
Oh, my heart goes out to you. I am sending you a calm, gentle ehug.
-Susan (Scribelle)