Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue
Hello,
I'm visiting from the fibromyalgia board. I don't doubt my condition just know that something else is going on. Been tested for everything, most of them multiple times.
In jan 99 I got pregnant. I went from active, happy, healthy to gaining weight like crazy, extreme fatigue & derealization. My body felt sore, tired, heavy but felt with it.
I've had many issues over the years.
In 2003, felt alittle better & Lost 55 pounds in 3 months.
Always exhausted & it's been difficult living with derealization, it's chronic & never goes away... But I was able to push myself. I made myself get stuff done.
Had a good pregnancy in 2009. But recovery was awful, just extremely exhausted/lethargic. Then I piled on 35 pounds & no idea how, scale just went up.
Pain from an injury in 05 became worst. Seen a chiro & had none rubbi on bone so pain is understandable. I just don't left heavy stuff & very careful. But my neck, shoulders & upper back started hurting. The sports injury dr I was seeing said there was no reason for it, prov thought I was nuts.
Seen a family Dr & she thinks I had Chronic Fatigue Syndrome all those years. She sent me to a Rhumetologist who diagnose me with Fibromyalgia & says CFS is a symptom... I had body aches & pains but bearable. Before I was diagnosed I had headaches about 5-7 days a week. I found that rest prevented them. I started getting flares from stress or over doing it. Pain so bad... Im nauseous often, usually aug - may each year, that's hen it's worst. I vomit with or without a migrain like headache. I think it's my body's way of dealing with the pain. It's been so ba I prob should of went to the ER.
I take Savella, Tramadol & Savella 2x daily each. I rely on them now.
I wake up so exhausted, my body is always still & sore everywhere, pain is worst in my back, neck & shoulders. Feels like all my muscles & joints hurt all the time. I have tried med free & the pain was unbearable.
What I don't get is why I am getting worst instead of better.
I feel like I always have the flu, always exhausted & hurt so bad! I always feel better as the day progresses, best in the evening. Course that's also a series of meds during the day. But the fatigue is best in the evenings.
The joints in my fingers are swollen & hurt. Cant wear my wedding ring. My fingers don't look fat or swollen, doesn't feel like fat is around my joints, just seems like my joints have gotten bigger. I do have edema especially moon face which I think is allot of my weight issue.
I called the derealization brain fog for years. I have seen a physicologist who diagnosed me with PTSD. I have had a harder life than most people. It was tough as a child & my first husband is pure evil... But I'm able to put all that behind me & get on with my life. I doubt my derealization is from that. It sux though. Feels like I'm always in a dream. Like I'm intoxicated but not drunk... A drugged feeling. Hard to explain. But it's always there & really tough.
I feel like my life is ruined because of my pain, fatigue & derealization. Like I said, I don't doubt fibro but feel thy there is something else causing the derealization & making my pain & fatigue worst. I'm also very forgetful. To the poit where I don't remember something that happend mins before. Feel like I'm losing my mind sometimes. My eyes & mouth dry. Sensitive to bright light & noise. Especially worst when I hurt more...
I am going back to a primary dr I really like. I've been tested for Lyme but want more tests done. What tests can I ask for?
There is a naturalist near hear but I can't afford $200 jut to see him... Maybe one day but definelty not right now.
Oh, I also have anxiety but with good reason... I have a stressful life, more so than most.
Sorry so long. I am jut sick of being sick & getting worst. My life revolves around it. I feel like I'm missing out on my kids growing up. I'm here, but not all here.. Ya know...
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue
I actually suffer from a majority of what you are suffering from! I too feel there's more Going on! We have to hang in there! It's SO hard I know. I pray !
The following user gives a hug of support to annie193: thefarm (09-03-2012)
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue
Hi, something that I have learned along the way. Is our bodies don't just do these things without a reason behind it.
I sent you a p.m. on some ideas.
To check if it is lyme. The best lab to be checked by is Igenex lab, Palo Alto, Ca. You can request the test kit. Then you will need to take it to your doctor to have the labs signed off.
But in my case my lyme didn't prove to be positive until 12 years into treatment. Lyme testing is not always accurate. I finally had a doctor that listened to me and got me started on treatment. You definatly should think about seeing a LLMD. Lyme Literate medical Doctor.
Many doctors try to treat the symptoms and not the cause.
Keep searching,
Welcome to the board.
Jodie
The Following User Says Thank You to jojo For This Useful Post: thefarm (09-03-2012)
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue
Hi! I totally empathize with you. Your story sounds just like mine. I was so sick and no one could figure out why. I saw so many specialists. It wasn't until I got to a Lyme literate md that I got a diagnosis of Lyme disease. Have you googled these symptoms? The way I finally figured it out was by googling my symptoms and Lyme kept coming up. Can you go online and google Lyme symptoms? I'm not saying that this is what is wrong, but your story mimics mine. It is a horrible way to live. I prayed I would die because I was so miserable. But I want you to know that there is hope. I am on my road to recovery now. I don't want to tell you what to do, but you might want to explore Lyme disease.
The Following User Says Thank You to annalisa9397 For This Useful Post: thefarm (09-03-2012)
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue
I totally sympathize with you. I was diagnosed in l990 and still am sick. the docs do not believe me....am told I have fibromyalgia, myfacial pain sydrome, arthritis and a bad back, the back had surgery in l997 and relief lasted only a year, back to square one with that. we have to hang in there, that is all we seem to be able to do. Know that you are not alone, there are many of us with this same problem. and yes, I have had test after test that came up negative...well, years ago I came up positive only twice, and the tests after that were negative....and I did have the tick bites and target rashes also...I hope you get relief from your pain and gentle hugs to you....
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue
Oh my goodness! You obviously need treated for Lyme! What is wrong with doctors! Have you seen a Rhumetologist or Naturalpath? I'm so sorry! I hope you can find a good dr soon!
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue
Quote:
Originally Posted by seniubr11
the farm-you mentioned you have been tested for lyme, was it the western blot and what were your results?
It was just labs at my drs. Haven't seen a naturopath, I think they do the western blot test?
I didn't have actual pain till 11, almost 12 yrs after my first symptoms started, so I'm thinking its not Lyme... I believe with Lyme pain starts in the beginning...
I'm being sent to a neurosurgeon now to get the lip biopsy for Sjogrens. I really think that's my prob. Blood work was negative but I found that they aren't very accurate & the lip biopsy is the most accurate..
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue
I really really think you should be tested for Lyme disease. Symptoms do not have to start right away. Please google lyme symptoms. Also go to the Lyme disease board and there is a lot of info on there. If you would like more info from me, and what I went thru and what my treatment is, I would be more than happy to share. I feel like lyme may be your answer!
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue
I agree also, I never thought in a million years I had lyme, but I did and I do. My extreme body pain and stiffness didn't set in until a few years in. I knew something was wrong with me, I just had too many different symptoms in too many body parts when before that I was perfectly healthy.
That's a big clue to lyme also, if your going to a million different doctors for so many different things with no explanation.
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue
That is interesting... Do those if you with Lyme have Derealization? You may have to look up the definition... Not to be confused with Depersonalization... With you pain, is it all over & Tendar areas like fibro? My pain set in & just got worst & worst. My newest Rhum has me taking tramadol twice & day & that has helped. But all it does is take the edge of so its more bearable. Worst pain is in my neck & radiates into my holders, upper back & back of skull. It all just seems to get worst rather than better. I have been chuggin water & that's helping. If I get a negative Sjogrens test I'm thinking my next step will be a naturalpath. We are in a very small town & actually have a local naturalpath so that's nice... I just don't have the $200 to see him...
I read that if you have chronic Lyme, it doesn't go away. Is that true? Is it atleast treatable so symptoms aren't as bad?
Yes even after all these yrs I still don't have all te answers I should have... So many symptoms over the yrs. most have stayed while some have come & gone.
There is a movie I seen on one of those online movie rental sites... I know I'm not suppose to advertise the site name but the movie is called "Under Our Skin". It's about Lyme & really interesting! I watched it a couple yrs ago & found it so interesting I kept it in my movie queue so I wouldn't lose it. I think I'm gonna watch it again soon.
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue
Have you googled lyme symptoms? I can tell you that my lyme caused neck pain, rib pain, and knee pain that completely disabled me. I'm going to look up derealization and get back to you. Most people that I have contact with had so many different symptoms and saw so many drs with no diagnosis. Once they see an llmd or a naturopath, they end up getting a diagnosis of lyme.
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue
In regards to derealization: I didn't have it to the extent that the description gave when I googled it. However, with lyme I have had panic attacks that lasted seventy two hours, anxiety that was indescribable, and felt like I wasn't connected to the world. I forgot my kids names, didn't know the day of the week, and couldn't remember anything from a minute ago. My lyme diagnosis saved my life. Once I got on antibiotics these symptoms slowly dissipated. I still have a weird brain fog sometimes - kind of like I am functioning within a plastic bag. But I am so much better - I've been in treatment almost a year. I am functioning again
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue
That's great you are doing better! Is your pain better? Fatigue? Will you always have it or the symptoms?
I have looked at Lyme symptoms but only some of the symptoms seem to fit me... I know that if I don't get a positive Sjogrens biopsy I'll have to get the Lyme tests done. Can't keep looking for answers & no idea what else to test for. The drs I see have been really good, can't stand the Nuerologists I've seen...
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue
I am doing so much better. The antibiotics and supplements have really helped me heal. Pain is gone. When I do feel bad, it is more neuro symptoms. The neurologist I saw told me to eat more protein. I was literally dying and he told me I was as perfect as a peach. A naturopath would be a good choice for you too I think.
I am so sorry you've been dealing for so long without answers.
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue
I am doing so much better. The antibiotics and supplements have really helped me heal. Pain is gone. When I do feel bad, it is more neuro symptoms. The neurologist I saw told me to eat more protein. I was literally dying and he told me I was as perfect as a peach. A naturopath would be a good choice for you too I think.
I am so sorry you've been dealing for so long without answers.
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue
yeah I had to look this up..lol..derealization..I would say so, sometimes I feel when people are talking to me I'm thinking of other things like a floating feeling, maybe like I'm in another place, and it goes along w/my severe depression.
I also constantly have negative thoughts. If I watch something on tv like human or animal abuse, I break down and keep repeating the thoughts in my head.
As for the pain, yes my pain is all the muscles in my body, tender points seem to be all over especially the space between my neck and shoulders. I constantly feel I need to stretch, but it does nothing for me, it actually sets off major migraines. The migraines are in the sides and back of my neck and in the forehead, my forehead burns and is so tight.
When I look down, my spine seems like it's being stretched. All of this pain causes me to be constantly nauseated. Every area of my body hurts. The top of my arms are stiff and burn constantly.
When I got reinfected, at first I still thought I also had fibro because it seemed like there were two different diseases in me, I know it sounds funny but it really did, then further into treatment, the fibro symptoms intensified which I think the treatment is making it worse, so in a way it's working and these fibro symptoms are really lyme.
I know a lot of people w/lyme describe mostly the joint pain, which I have, not so much in my knees, but I would have say I fit the symptoms of fibromyalgia more than lyme, more muscle pain than joint pain. But I look back through the years and when my symptoms first started I did have some neurological symptoms as well, i.e. I was at work my arm went totally numb then traveled up to my mouth my tongue went numb and everything following by a sever migraine, this only lasted about 15 and never happened again. I;ve also went blind a few times by black floater in my vision, again only lasting about 15 minutes each time
I was driving myself crazy trying to distinguish these because I've been so sick for almost 10 years only to be diagnosed w/lyme last year when I had the rash apparently I was reinfected, but I looked back at my wb test from 2007 and I was reactive to band 58 ONLY which now I found out could have been diagnosed as lyme. I have been treating for 1 year now aggresively and sad to say, little progress, but I'm not stopping treatment. I can say my true brain fog I've had all these years is getting better, but now I have confusion because of the intense pain, if that makes sense. And my migraines are getting better.
Also if you type in what you think a symptom that would be specific to lyme in, fibromyalgia also comes up.
Honestly, I still think what if I treat for lyme and the "fibro" symptoms are still there. One theory I have on this is maybe not all people w/lyme have the fibro symptoms because of all the different coinfections and all the other chronic virus and pnuemonias that come from the immune system being compromised? I have all of these, and most people w/fibro also have these.
But usually once lyme is treated sufficiently , these other infections get better. It's all so frustrating, all I know is if I do fully recover and the lyme treatment clears me up, I'm going after all the doctors that screwed my life up this bad, I know I can't do anything legally, but they're all going to hear my mouth. There is NO reason why one of those doctors couldn't find this.
None of these doctors could have done an infectious disease panel?? for me or anyone else going through this?? I had a lyme done in 2007 but that was by an llmd years after my symptoms started, but he didn't even treat me because I only had the one band. I'm sure if one of these idiots would have done one , I would not be in this position right now.
Ok hope this helps a little, and I'm so curious to know your test results.
Re: Going on 14 yrs of problems, Derealization, fibromyalgia, chronic fatigue
Annalisa- That's wonderful you have improved so much! Did your symptoms get worst before they got better?
Seniubr- I seen on that movie that things will get worst before better... It took one guy on there 3 yrs of treatment to get better... He was a park ranger & actually had saved the tick that bit him, had the rash & symptoms but still took 5 drs before he got help & by then he needed much more treatment. He had to fly to get to a good dr that would treat him... Just really irritating to see what people had to go through but very worth watching!
For me the derealization is like feeling drunk but not quite drunk or when you wake up in the morning & not quite awake. Maybe like being up for 3 days with no sleep. I guess it's normal for people in stressful situations or no sleep but not normal to have it often. Mines here 24/7 & never goes away. Very frustraitig. I've had it so long I've learned to function but sometimes I wonder how I function at all.. I also describe it as feeling drugged. That's why I don't understand why people take street drugs, not a good feeling...
For me that's the major neurological problem but I'm also extremely forgetful. I don't recall events that may have just happened a min ago. Been tested for seizures & that was normal.
I get those all over headaches also. That's the one thing that will keep me down. With 4 kids I'm up & down allot making myself get stuff done. Even when I'm really sick, if there isn't a headache I'll do dishes & stuff in between vomiting. But I just don't care with the headache lol
On the movie it has a list of people in just one area that died from Lyme, very scary... It also talks about most people that have ms are positive for Lyme. I dunno, just a lot of info on there.
I agree , I'd love to sue the 10-30 doctors I've seen. Lol so many that brushed me off for so long I don't have a clue how many I've seen... Then the couple that listen don't have a clue & I think it's because the medical feild tells them to believe in basic unreliable bloodwork...
