New Fibro Patient

General
1

I was recently diagnosed with fibromyalgia. I'm still in the process of accepting the fact that I suffer from such a painful, dibilitating illness at such a young age. I guess I have always thought that I would be active and pain free AT LEAST until I'm 60 lol. Nieve.

I was diagnosed with costrochondritis about a year ago. Initially, I was told that the condition only lasts a couple of weeks, maximum. It wasn't until 6 months of constant pain, pertruding ribs, and frequent flairs that my doctor decided to look into it further. After explaining that my pain was more than what was associated with my ribs, that I have dramatic mood swings, RLS, memory loss, joint stiffness, chronic "charlie horses" in my neck and on the side of my knees into my calfs, fatigue and restlessness; my doctor finially began the process of elemination. I had a complete bone scan, x-rays, MRI, CAT scans, countless blood panels, Nerve tests, etc. His conclusion-Fibromyalgia.

I also have some sort of digestive issue going on. I'm not sure if it is fibro related, as I don't know much about my new diagnoses. However, I have undergone a thyroid biopsy, upper endoscopy, and will soon have a colonoscopy. I'm 6'1 and weighed 190lbs when this all started. Within 3 months, I dropped to 157lbs without trying. I have managed to gain 10lbs over the course of 9 months, but that was a HUGE challenge. I'm full easy, have constant bloating, abdominal pain, and when I do manage to eat a complete meal I'm sick within 20-30 minutes of completing it.

I feel like I no longer know myself. I can't stand myself most days. I'll be completely fine one minute, and the next I'm either aggrevated, mad, or sad. My patience for people in general is at an all time low. I can't have an indepth conversation, remember where I put my keys, half of the time I walk in a room and can't remember why I'm there. My vocabulary seems to be dissipating. Sometimes I can't even remember how to spell simple words, let alone speak them.

My doctor has tried nearly every medication out there with me. I'm currently taking a low dose of oxycodone for my pain. He has put me on cymbalta, but I can't take it during the day...as it makes me too sleepy to work. I try to take it at night, but when I get home from work (midnight) I go straight to bed and forget to take it. Same with the lyrica.

Has anyone else struggled with the stomach issues? Costrochondritis? What meds have you found work best? Is there a way to "beat" this fibro fog, mood swings, fatigue? Any suggestions would be greatly appreciated, as well as hearing how you deal with daily living. I look forward to building new friendships here, as we help and encourage one another along our journey with this illness.

2

Yes def digestive issues are related to FM, esp Irritable Bowel Syndrome. As for the fibro fog, I tend to think that’s medication related. I was very very forgetful while I was taking Lyrica.

3

Hi Shan,

Welcome to the support group. I had digestive issues, lactose intolerance, allergies (gluten and corn syrup ) and IBS from 1989 - 1995. I was diagnosed in 1995. The doctor put me on Elavil for stabilizing the serotonin level. My digestive issues were minimized and I have not had IBS symptoms since I have been on it. For two years I had gone off the elavil and IBS symptoms returned. I went back on and they went away. I still avoid wheat but my tolerance is better. I can eat ice cream without consequences. I recently read somewhere that someone had the same experience with elavil and IBS. I hope this might help.

4

I take acifex for my stomach issues. I loose my words also. My family and friends understand.I also have memory loss. I am sleepy a lot. I use a cane for stability issues. Ultram does nothing for my pain, but my pain management dr. will not give me narcatics. I am now taking a new drug-Nucynta 50 mg. I have not tried it yet. I want to take a pain drug that I can take as needed, not all the time. I take two cymbalta at night. I communicate with most people on FB instead of in person. My shrink said I was a loner. My boyfriend sleeps in one room of the house, and I sleep in the other. We each have our on little living area so we can get our space.

I am disabled and got it before I was diagnosed with fibro. When I have fibro fog I just go to bed and talk crazy to my boyfriend. He knows just to get me something to drink and leave me be. You sound like you are working a lot of hours or on strange hours. I wish you the best. I have not worked since April 2005 and received my disability in 2007.

I bought a new vehicle on St. Patrick's Day and have driven it 4 times. I don't get out much, and when I do I sometimes don't feel competent to drive.

I hope you get along well with Lyrica. I could not take it. In fact, my neurologist, classified me as being allergic to it. It is in my records as such. It made my lips turn inside out! I take Robaxin as a muscle relaxer. AARP just came out with harmful side effects of that Melatonin Plus. I threw away the paper so I can't tell you exactly what, but it damages certain organs. I wish I had kept it. The acifex is a powerful stomach medicine.

Good luck and keep in touch with your progress.

5

Hi again,

I had crazy mood swings after I had my son is 2005. It took a while ( 2years) before I was diagnosed with Bipolar. I went on Lamicatal. It took a few years to get the dosage right. I noticed at the time my patience had grown very thin and my husband and family seemed to be getting on my nerves a lot. Atfer yelling at a doctor for a good 5 minutes they decided to try Risperdal. I am on a low dose and the side effects seem nonexistent but the drug does get a lot of bad rap so I do not want to say that is the first option. My memory was horrible and very scarey when I was not taking anything. A fibromyalgia specialist suggested that I try Zoloft. For me and maybe not others, I noticed an improvement in my memory in about a week. It was a drastic change. I still have fibro fog but I have good days. I was also experiencing a lot of pain in my back and arms and the Zoloft combined with elavil helped get rid of it. Really, I was having back pain and arm pain for 7 months. It has been 12 years and I have not had an issue with my back except for when I go on 2 hour car rides. I wish you good luck

6

Hi Shan,

You must think I am crazy with advice. But I like to back up my observations with a little science or research. I went to Rate a Drug website and they measure the responses from people for Zoloft. They had ratings from ' much worse' to 'much better'. Zoloft: 'much worse- 5.2%, 'worse-9.4%' 'BETTER-29.7% and' 'much better'-17.8%.

7



dozer said:

Hi Shan,

You must think I am crazy with advice. But I like to back up my observations with a little science or research. I went to Rate a Drug website and they measure the responses from people for Zoloft. This is the rating for memory They had ratings from ' much worse' to 'much better'. Zoloft: 'much worse- 5.2%, 'worse-9.4%' 'BETTER-29.7% and' 'much better'-17.8%.

8

First, I'm so very sorry to hear all you've gone through. There are some things that may help. A lot of people (not all) have improvement with supplements. I take Vitamin B-12 which helps with the fog. Also Vitamin D -- have your doctor test your levels if you haven't had these tested yet. Also test for all strains of the Herpes virus, Epstein-Barr, and Parvo. I have EBV and Parvo and had a very low Vitamin D level. Antiviral drugs can help if you do have any of these but it takes a long time. I take Acyclovir for them. I also have IBS and found that diet is the best way to control. The doctor told me to avoid dairy, gluten, corn, sugar, and processed foods. Since this is pretty drastic try eliminating one at a time and see if you notice improvements. Go without gluten for a week or so and then eat bread - if you have a reaction you may have found a trigger, etc. Watch over medicating - doctors throw all kinds of meds at us and most have side effects which can make your symptoms worse. Look for a homeopathic or naturapathic doctor who understands fibro. Fibro is a syndrome and most of use have mulitple autoimmune problems. Mine will be different than yours. So treatment has to be customized based on what your problems are. Also ask about a sleep study - most people with fibro also have sleep disorders. Hope this helps!

Nancy

9

Hi & welcome ! Accepting this horrible condition was very hard, it really took me 2 years of research, dr visits, & lot of blood work , scans , ect… Savella has really helped me , not so much with the pain , but more w the ability to emotionally accept & deal with what I am living through. This online support grp has helped alot. Finding a dr that understands fibro, is critical ! I am allergic to lyrica & could not take the gabapenten, the savella works similar 2 the cymbalta, I don’t seem 2 have the fiibro fog that everyone talks about, not sure if it’s the savella helping or what , but I have noticed I forget words , I have 2 write everything down, and I sometimes can’t spell the easiest words. I wish you all the best , this is not easy , accepting limitations has been so hard especially since I was so active prior 2 fibro . Stay strong & by the way I did have costocondritis 14 months ago & my fibro has been really bad since & prior 2 that I had a bad infection infectioin in my bowel, god bless hang in there

10

Shan, I am so sorry you are going through this. This syndrome is truly a challenge to deal with. Early on my Doctor advised me to ride the symptoms like a wave knowing that each one will improve. That has proved to be a very helpful image through the years. For me, the fibro fog is not medication related but rather is like a signal that I am about to have a seige of pain. There are drugs that made this worse for me: Cymbalta mainly. For me the SSRI’s help me to not be overwhelmed by the pain. Lyrica did help the pain but caused rapid weight gain which might actually be a plus for you. Some people do recover from this I am told but for those of us who don’t, we have to lower our expectations of ourselves and find things that we are able to enjoy. I will never forget the day my parents (in their 70’s at the time) went to a workshop on Fibromyalgia so they could understand what I was going through. They called me to tell me that the Rheumatologist said that sex was the best pain reliever! I hope that gives you a smile. It isn’t always realistic but the thought makes me smile.

11

Shan, I am new to this group. I can understand where you are coming from. I wish fibro was my only problem. I was like you I thought I would not have to deal with memory problems and and pain till I was older. Hang in there and do not give up.

12

Shan.All of those symptoms come with fibro.
Everyone has taken diff meds.Some work some don’t.
I hope you are seeing a rheumatologist.
Right now I am taking mobic twice a day for pain,paxil for mood swings which
I am going to take at night because it wipes me out.I can’t get presc sleep meds
cheap so I use over the counter.
I have IBS.I live with it.You can try a gluten free diet if you can afford to buy gluten free and take the foods.
I was operated on for Gerd.It still acts up.
I haven’t found anything for the fibro fog or dyslexia.
All you can do is hang in there and keep trying.We are all in the same boat.
I do still work because I was not seeing Doctor for years because of no health ins.
I started to get exhausted between 2000 and 2001.
I had dyslexia,IBS and insomnia in high school.No one tested for any of it.
Good luck.

13

Anyone with IBS should try psyillium seed husk, it comes in large capsules but I open two of them and put them in a yogurt or smoothie. I can't swollow huge meds so I put all of my vitamins along with half a banana and frozen fruit into the smoothie each morning. It has worked great for the IBS.

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Sharon.
Thanks for that info.
How much do they cost?
Do you take two every day?
Joann

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Shan, welcome.

We all go through the same pain and fog, find you a good doctor and one that will work with you it took me a few years to find one but it does make a difference the newer drug savella along with pain meds and muscle relaxers work for me, but by work I do not mean fog and pain free daily someone needs to find a miracle drug for that to happen for us. Most of us have more than just the fibro it just seems to come with the territory and none of the doctors I have seen have been able to tell me why this is, just something else we have to endure. Hang in there we are here for you.

Hugs Pat

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Hi I am new to this site. My name is June. I was dx with fibro approx 10 yrs age with my twin sister Joan. If I don't take my cymbalta,60mg twice a day I wouldn't be able to get out of bed!! I have to take it slow and pace myself to get through the day. Now, I have some interesting info I want to share. My gd was dx(after 3yrs of suffering) with "chiari malformation of the brain! And EDS; a conective tissue disorder!! And it is hereditary ,and genetic!! Her Dr. Dr.Bolognese of NY and head of the Chairi Institute believes that fibromyalgia is being misdiagnosed!!! It is found on an MRI test. Most Doc. don't recognize it!!!! You see; the skull is not big enough for the brain at birth and so the "tonsills of the cerebellum push down the spinal collumn putting pressure on the spinal cord!!!!!!! (PLEASE RESEARCH THIS)!!! My gd had sx Jan 27th 2012 for decompression of her brain. and because of the lEDS just had fusion sx. (she was like a bobblehead) She would have died without sx. She now has a rod, nuts, and screws holding her upper spine steady!!!! I have had an MRI back home(in NJ) He is now going to look at my disc to see if I have it too! He said he was sure I did!!! I will keep you updated. Hey it's worth looking into!!

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Omg.welcome! THE ISSUES WITH FIBRO ARE BROAD …I HAVE HAD THIS FOR SIX YEARS…MY DOCTORS SAID SINCE FIBRO UPSETS THE ENTIRE BODY SYSTEM …SO ANY SYMTOM THAT IS UNUSUAL SHOULD BE ADDRESSED…SO I GUESS I HAVE BEEN TO THE DOCTOR A THOUSANND TIMES…SO ALWAYS TAKE CARE AND HAVE YOURSELF CHECKED .FIBRO PLAYS TRICKS AND MIMICS ALOT OF DISORDERS…FROM SINUS.MEMORY.TUMMY AND EVEN THOUGHT I BROKE MY LEG AND HAD EXRAYS IT HURT SO BAD AND IT WAS JUST FIBRO PAIN…I SHAKE AT TIMES ALSO…HAVE TO BE SO ZEN ABOUT MY LIFE NOW…IT HAS TAKEN A WHOLE LOT AWAY FROM ME…

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They don't cost too much, $12 dollars for a large bottle from GNC. It will last over two months.

irishroots said:

Sharon.
Thanks for that info.
How much do they cost?
Do you take two every day?
Joann
19

Thanks fot the info.

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Hello there! We have many things in common. One thing that struck me is that for me, many of the mood issues I had went away after I discovered I am allergic to gluten and changed my diet. I would highly recommend doing a few days off of gluten and see if you feel a little better. Take care