New to the forum?

Sign Up Here!


Already a member?
Please login below.





Forgot your password?
Need Help?  
i'm new here, and i have a question
19 Replies
kristina622 - December 6

Does anyone else believe when people say there is no such thing as fibro? It's been bothering me lately. I was diagnosed a year and a half ago, and even though I am used to the pain, the unrefreshing sleep, the dizziness, bouts in the bathroom, etc, I feel weird telling people I have fibro. I just got a new job at a veterinarians office(my dream!!) and it is hard, hard work. There are 11 hour days, and I just want to break down and cry, but I can't help but wonder if it is all in my head. When i was diagnosed, I slipped into a horrible depression and I packed on a good 60 pounds. I am really overweight now, its so hard to lose it. This job is helping with the weight, but physically its weakening my body more. i haven't told the ppl at work yet, but i think I might have to since they think I am just weak because I am fat. I don't know anyone else with fibro and I really need someone that I can talk to and rant with. Please, its been 2 years of no one understanding, losing friends because no one understands. I just started taking vitamins that I hope eventually helps.

 

Sonja44 - December 6

Kristina622,
You are not imagining Fibromyalgia (FM) ...it is real and recognized by the Centers for Disease Control (CDC). The CDC is the foremost authority on any disease. If someone says FM isn't real...tell them to argue with the CDC...not you.

FYI, Multiple Sclerosis (MS) used to be called "Hysterical Paralysis" before the use of MRI's which showed transit lesions on the brain of the person suffering. Then the medical community could give it a real name.

Just because we don't what causes FM doesn't mean FM doesn't exist.

I was Diagnosed with FM and Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) 9 years ago. Do you have Rhumatoligist? (sorry, I just blanked on that spelling...fibro fog. LOL). If not, I would highly recommend you do so.

You are not alone!!! So glad you found this forum.
Take care fibro friend :)

 

Fantod - December 6

Hello kristina622 - Have you seen a rheumotologist? You say you were diagnosed but by whom? You should be on medication to help manage the symptoms of fibromyalgia (FMS). Vitamins or OTC medications are simply not going to do it. Fibromyalgia is recognized by the National Arthitis Foundation. Unfortunately, there are still plenty of doctors out there as well the general public who think we are all hypochondriacs. If you have not seen a rheumotologist, I recommend you go to the National Fibromyalgia Association website and ask them for a referral to a fibro-friendly rheumy in your area. You could also call your local hospital physician referral service and ask them who on staff treats fibro. Another option would be a pain specialist. Only certain classes of medication work for fibromyalgia and they are anti-depressants. The drugs that are commonly used are Amitriptyline for sleep, and Cymbalta or Lyrica for pain among others. I suspect you are not being managed properly and/or have not been honest with your doctor about your depression. If you are seeing a rheumy go and get a second opinion. A fresh set of eyes may make a big difference. FMS is not the end of the world. With careful managment, you can still have a life. You have to listen to what your body is telling you and respect the message. We all need more rest and staying on the drug regimen is very important. Diet is huge because certain foods will probably make your symptoms worse. Fried foods, processed lunch meat and diet soda or diet anything will make your pain level go off of the chart. If you need a sweetner in coffee, go to the health food store and buy Stevia. It is a nontoxic sweetner and tastes good. It is very difficult to get other people to understand how debilitating it is to live with chronic pain. You can start by sharing this site with them. The better educated you are about FMS, the better you will be able to deflect criticism. Take some time to read all of the information on the lefthand side of this page throughly. Knowledge is power. I even put a clothes pin on the end of my husbands finger to replicate (sort of) the kind of pain FMS can cause. The object of that exercise was to see how long he could stand it. I've also described FMS as having a bad case of the flu 24/7. Losing weight is particularly difficult with FMS. It is so hard to be motivated to exercise when we barely feel well enough to get out of bed. I would suggest that water exercise for people with arthitis might be a good choice. No weight bearing on the joints and the pace of the class will be less frenetic than a regular water aerobics class. Tai Chi is also recommended for FMS. It may not look like much but it actually gives quite a good work out. You could purchase a Tai Chi DVD and try it in the privacy of your home. Before you say anything at work, I would get an appointment with a new doctor and see if anything they recommend helps. I guess I am more concerned about your depression than the weight right now. I'd also like to gently suggest that you consider seeing a professional counselor. There is nothing to be ashamed of; I see one myself and it has been helpful. If nothing else, I come away knowing my head is screwed on straight. I've learned some good ways to cope with insensitive and the rude comments people make about FMS. Once you have some of these concerns under better control, I think you'll be in a better place to work on losing some weight. If you have additional queations, ask away. We will all try to help. I hope that you find my suggestions helpful. Take care and enjoy the weekend.

 

Fantod - December 6

I just saw another post in which you said that you do not have health insurance. See if you can find a free clinic that can dispense the medication that you need. I'd try calling your local hospital and asking if they are aware of any and tell them what you need. It may be that some of the staff will ocassionally take patients pro bono. If you can get enough money together to see a rheumy, be sure to ask for drug samples and tell them why. Times are really hard for everyone - there is no shame in asking. The drug companies all have assistance plans to help with drug costs if you are unable to afford them. You may have seen the TV commercial with Montel Williams - partnership for prescription assistance. By now, you've figured out that FMS places a huge amount of stress on the body. Now I am going to offer some other options with the caveat that these are not a sustitute for a rheumotologist. Go to a decent health food store and buy some Melatonin - 1mg to take at night to help with your sleep. Start it on a day off to see how it affects you. If 1mg is not enough after a week or so, increase it by half and wait another week. You can go up to 3mg safely. Get yourself on a schedule so you are taking it around the same time every night. For anxiety, try 200mg of L-Theanine. Again, take it on your day off to see how it affects you. You may just want to take it at night to help you sleep. I have used it both during day and at night to good effect. It is very good for stress and anxiety and does not make you loopy. For muscle twitching, and cramping, purchase Malic Acid (825mg). I usually take that at night so my sleep is less disrupted by charely horses etc. Sublingual B-12 with folic acid is good for energy. The folic acid helps B12 absorb. It needs to be taken properly to be effective. No food, tooth brushing, gum, smoking or drinking liquids 1/2 hour before OR after placing the lozenge under your tongue. As with any medication, make sure you understand how to use these items and the risks associated with the them. Hopefully some of these options will help while you look around for a clinic that can get you proper care and meds. Keep in touch and let us know how you are doing. Take care.

 

Fantod - December 7

Here is a final thought on your situation. You might trying asking United Way and/or Catholic Social Services (nondenominational - anyone can get help) for assistance. Google United Way or CSS and the name of your metro area to get the contact information. If they can't help, they may be able to point you in the right direction.
If you can scrape together enough money to see a rehumy, be sure to tell them that you have no insurance and ask for some consideration. Most doctors will give a break on their fees under these circumstance. Take care.

 

kristina622 - December 8

thanks so much everyone. i recently tried to find a free clinic around my area but i can't seem to find one. i was on zoloft for about a month but i would much rather try taking vitamins then drugs. i will definitly try the melatonin and malic acid. i've heard good things about melatonin. i've also started taking hot showers or baths every night and that help with the pain and with the sleeping. my fingers hurt bad today so good night and i'll get the stuff you recommended fantod.
and i have seem a rheumotologist. him and a pulmonologist diagnosed. he didnt want to put me on anything since i was so young. all he gave me was provigil to help with staying awake.

 

from-fibro-2-college - December 8

Kristina, don't lose hope now girl! The people who don't understand either know nothing about fibro or know no one with fibro. The arthritis foundation can send you information about fibro and possibly that information can be shared with your co-workers. If you're taking Lyrica for your fibro pain, it does cause weight gain in some. You might consider another med. Fibro is a very real and disabititating condition, but can be managed with the right meds and plenty of rest. For myself, I have been put on Elavil for depression which is taken at bedtime with one Trazadone (a sleeping pill) which has helped me greatly. Plenty of rest equals not such a painful day. Actually, I don't have to rely on the sleeping pill every night. Hang in there and don't give up if people make you feel that there's no such thing as fibro. Those of us who have it know better. My prayers are with you!

 

Fantod - December 8

You really need to see another rheumotologist - go to the National Fibromyalgia Association website and get a referral in your area to a fibro-friendly rheumotologist. Not all rheumotologists are created equal when it comes to treating fibromyalgia. The rheumy you saw did you no favors at all.

The stress that FMS places on your body can be very serious over time if it is not properly managed. Eventually, there wil be a cascade effect and more things will go wrong. I hope you will consider seeing someone else and get on a proper regimen of medication.

Chronic pain is best managed by taking an ongoing amount of medication. If this is not done, eventually it becomes more difficult if not impossible to get it under control. You really are playing with fire. Take care and keep in touch.

 

reychel - December 10

Hey.... stop it!!!!!!! Fibro is real.... and dont let anyone tell you its not!!!!!

About the weight.... I go through the same thing, but I can tell you this: everytime I get better from my fibro I lose weight... but when I have crises I gain . Just learn how to deal with that and dont stress about it!! Really...

good luck to you

 

dmpuppylove - December 12

OK I am new also as of a few minutes ago. But I am not new to Fibromyalgia. I have done more research on it than I care to imagine. One of the symtoms of it is drug allergies. Now after 50 years we know why I am allergic to almost everything (drugs)I use mostly herbs etc as I can take them with out side effects. Kiddo you are lucky to have a job like that. The animals are one of the best meds I know for fibro. I am in rescue & if it weren't for my 8 that I have now I would not be able to cope with this fibro. They give me strength & keep me going.
2 months ago I fell(well my shepherd took me on a flying lesson & landed me badly) Anyways I was in a wheel chair for a week- I scrubbed floors - worked everyday - Feed them & did what I had to do. The secret is- You are in control- don't let it get you down. You have to be strong willed & if you think you can't - that's when you can!!!!!!!!!!! Determination. I have had problems for 30 years & never knew why until a few months ago when what I figured was the problem was finally diagnosed by a Dr as fibro.
Now that I am sure I am going to learn to live a full & normal life. I am getting Reiki (which is great for it) & I am also relearning Tia Chi as I use to do it & it really gets rid of stress (Stress is fibro's best friend)
You are thinking but is she bad off.

Well- out of 75 symptoms of fibro I have 50+ of them. Yes I am All kind of problems. But I am determined to overcome them & adjust so that they do not stop me from what I want to do.

I am taking Fish Oil tablets 1000MG twice a day. It really helps. Also stretch alot.

Hang in there you can do it. If I can help you - let me know

 

kristina622 - January 1

thanks dmpuppylove! yea the animals help a lot. i have 2 cats and one dog, and once we get a house it'll be more like 5 cats and 4 dogs. lol. i love my job, but now i am learning from the people that have been there awhile that there is a lot of drama with a few people. it's causing me to stress more. i re-read one of the books i bought last year, Fibromyalgia-How to combine the Best of Traditional and Alternative Therapies by Milton Hammerly. It says that SAM-E has been used in many trials for fibro and it helped almost everyone. I am going to go back on it today(i was on it for a month, but it is expensive!) it is a new year and I want to get my life back. SAM-E helped a lot so I am going to make it a priority to afford it. I am also researching doctors and massage therapists in my area. i want to be happy and be able to live life. i cant take any more symptoms- i get excema realllllly bad now and i find that my memory and concentration are getting worse. i am the youngest person at my job and yet i am in as much or more pain then the older people. not good. i am 19 and I want my life back. thanks for your advice. i have started taking melatonin at night and it is working so i think the SAM-E will help even more. happy new year to everyone, and thanks again!

 

solanadelfina - January 1

Greetings and welcome to the board! Congrats on scoring your dream job working with animals- I'd love to do the same. It's incredible how sweet and intuitive animals can be on our bad days, and how much love they have to give us. :)

How awesome are your bosses? If you feel comfortable talking about your FMS with them, I'd recommend it. Mine have been very understanding about the whole deal and let me take 'breathers' to go sit in the backroom for a few minutes when needed for a little break, and even made some changes for me. I think it really lessens the stress if all the cards are on the table, both for you and for them.

I know it can really suck getting this when you're young and trying to get started (I'm 24) but it's not a matter of losing a life so much as having the rules change. Just as the river sometimes has to flow around a dam to get where it needs to go, sometimes we have to take a different path.

Feel free to rant as much as you wish- we're all in the same boat. I wish you all the best. :)

 

sunnydee71 - January 3

HI Kristin,
I've taken Lyrica for a year now and it was a God send. But recently I started on a product called FibroCare. It is a Malic Acid/Magnesium supplement. I encourage you to order some. It has helped with my pain and energy levels. The website is TyH (to your health).Or google FibroCare. Try it, you have nothing to lose. We with fibro must replenish our magnesium levels and add 1000mg of vitamin D a day. Check out my specialists website it's DrLapp dot net. I hope this info has helped. Let us know how you progress.

 

rola - January 3

Hello Kristina

Listen Kristina, it is not in your head, if you were diagnosed by a rheumotologist, then you have it. Well, I had a car accident 10 years ago, I was a young mom with three small children, and for one year, my family doctor kept telling me it was in my head. I am a Psychotherapist, and I always knew it was not in my head, but no one was listening to me. I loved the outdoors, from cycling, to hiking, you name it. I got to the point where I was in bed for a whole year, unable to lift my head off the pillow. I did put on 50 lbs, became depressed, anxious, and in terrible pain. After a year, a psychiatrist sent me to a rheumotologist who diagnosed me with fibromyalgia, and he left it at that. I figured, you know what, I will research and take back control over my life, who else would take care of my young children. No one believed me I was in pain because there was no physical evidence. Well, I am going to tell every single person who does suffer from real fibromyalgia, diagnosed by a rheumotologist, not just a physiotherapist, or a massage therapist. There is hope in managing the pain even if you feel that there is not. I went to a support group where everyone was crying, well, I cried enough already, I needed hope, not another episode of depression.
You need to find what works for you. If you can, stay away from medication. What worked for me (at times hahaha), swimming in warm water, aquafitness, yoga, stretches, relaxation techniques like breathing, and most importantly, do not get frustrated when you are having a bad, painfull day. Accept the bad days without stress, stress will only add to the pain. I have a lot of stresses in my life that does aggrivate my fibromyalgia, but I cannot change that, so I accept it, and go with the flow. In my good days, I go out, clean the house, visit friends, and feel alive again, and in my bad days, I dragg myself with my pain and all, go to work, and do what I am suppose to do feeling dead.
As a 10 years fibromyalgia survivor, no one understands what you are going through, or at times believe the extent of the pain and suffering, oh well, that's ok, train yourself to accept your situation, and do what you can when you can.
Don't allow people or fibromyalgia take over your will to fight.

 

Razzilou - May 13

Kristina ~~ BRAVO to you for forging ahead w/your dream job even though it's so hard to adjust to physically so far. I'm deeply sympathetic & want to encourage you to try to give yourself a while to see if you can figure out a balance of activities at home & work that makes the FM more manageable. The worst of FM symptoms do wax and wane over time ~ how badly you feel now may not be the way you feel 3 mos. or 5 mos. from now. Also, try to focus on the things you CAN do something about ~ as you're doing with adding vitamins. You may be able to talk to your boss and ask for the chance to alternate activities through the day so that you are able to sit for a while, stretch a little, drink water, be on your feet again, etc. If you have ins. & can get ANY physical/occupational therapy paid for, it can really help tons. Then, there's the joy of the animals you get to help heal every day . . . give yourself lots of credit for moving in a positive direction in spite of this hideous illness. I was dx'd in 2001 & have pretty much experienced the full gamut of the illness . . . my life has changed a lot . . . If I didn't focus on what I CAN do and on the good things, I'd have jumped off a cliff years ago! Hang in there as best you can . . . it really can get better . . . and you aren't ever alone . . . sad, but true, there are thousands of us out here. I'll be thinking of you! Best, Razzilou Annapolis, Md.

 

ana banana - May 14

Kristina622,

I have gone through the same. I usually just tell my co-workers I have back pain on those days I have to miss work. (Which is once a month now after 1 1/2 yr.) B/C I'm afraid no one will understand or think I'm a hypochondriac. My pain was at one point chronic and fierce. I was very depressed and survived on very little or no sleep at all. Gone to pain management and taken everything out there I feel. I even cut all my meds off cold turkey 'cause I was so mad of not improving and went through terrible withdrawals. It is much better now. This past year I decided that the root of it all is the quality of sleep I was getting. My doctor prescribed a low dose of Klonopin and I take a pill only on the nights when my anxiety level is high. Sleep has improved therefore my pain level has too. My flare-ups come on only during that time of the month or when weather changes. Positive thinking and laughing helps. Stretches on the Yoga ball will leave you feeling worse at first but in the long term I noticed relief. Now I am concentrating on trying to lose the weight. The fatigue is making that hard but I hope to battle that too. Good Luck! And keep the Faith. ;)

 

fibrospirit - July 12

hi sonja44-u sound like a real gem! was just wondering if the CDC is an american based company.i live in australia and if there is a CDC here it might help get on a disability pension if FM is recognized so.i am under the impression its nearly not worth the stress applying.i can only play on anxiety probs for so long,cannot work due to FM but need sm sort of income.

 

Message:


You must log in to reply.

Are you New to the forum? Sign Up Here! Already a member? Please login below.

Forgot your password?
Need Help?
Ask a Question