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Can someone please help me..
5 Replies
Dahlia - September 24

Hi, I just found this site today accidentally.I was diagnosed with Fibro in March.Then I had hip bursitis,and pain in 13 of the 'tender spots'.
In the past 6 weeks my pain has increased dramatically.I now have pain in both knees,my left hip and sacroilliac joint,both of my elbows and forearms and into my tarsals and the wrists.I'm in a lot of pain and feel so ill and depressed.I have recently had a lot of blood tests which have shown a raised level of enzyme in my liver,but no sign of inflammation.Does the 'inflammation' not show in blood tests with Fibro?? I'm really scared that I could have something else wrong with me and have scared myself to death today on the net until I found this site.I'm hoping someone can offer me advice.Feel so lonely at the moment even though I have a good hubby and two kids, don't think they get how ill I feel and the pain I'm in.This effects my whole life-my kids because I'm mostly too exhausted to do things with them, and my poor hubby.He's fantastic to me and our children and works really hard but as for our sex life...it's non existent!! Some dietary advice would also be helpful cos I've stopped taking my meds cos they don't work.Sorry for all the info at once-getting desperate xx

 

Fantod - September 24

Dahlia - Welcome to the board.

I'm going to give you a crash course on Fibromyalgia (FMS) so that you have a better understanding of what is happening to your body.

FMS is a disorder of the central nervous system that causes widespread, chronic pain. It is correctly referred to as a syndrome. The mechanism that causes it is not understood. There is no cure but it can be managed with certain classes of prescribed medication. FMS is recognized by the National Arthritis Foundation, the World Health Organization and the Centers for Disease Control. Over the counter remedies do not work for the type of pain associated with FMS. You would only be damaging your liver and stomach by relying on Aleve or Tylenol.

This website has some of the most comprehensive information about FMS on the Internet. Take some time to read through all of the information contained in the blue boxes on the left-hand side of the website page. There is excellent concise information on FMS and the many "perks" that can be associated with it. The “perks” include Restless Leg Syndrome, Raynauds, GERD and a host of other conditions. There is no inflammation associated with FMS. You should also read through the posts to learn about what other people experience and how they deal with it. I think that the key is to become educated as possible about FMS. Knowledge is power.

If you don't want to share this website with your family and friends to get them on board, there are a couple of other options. Go to the National Arthritis Foundation web site and use the "search" function to find the information on FMS. Send the link to friends and family. Go online to Amazon and purchase "Fibromyalgia for Dummies." It will have good basic information like any of the other books in the Dummies series. Read it yourself and pass it around.

It is very common for people with FMS to have friends and family who refuse to accept the limitations placed on a person who has this syndrome. Pain is subjective. For some people, if they can not see it, the problem must not exist. You are going to have to learn to ask for help, stand your ground, say 'No" and mean it and not feel guilty about it. And, most importantly, be grateful for everything that you can do as opposed to dwelling on the losses.

It is normal to be in denial after this diagnosis. There is a grieving process that goes along with learning to live with a chronic illness like FMS. And, a high level of anxiety is also very common. If you find that you can not work your way out of it in a reasonable amount of time, please consider seeing a counselor for extra support. Many of us, me included see someone and find it extremely helpful. You should try and find someone who has experience in treating chronic illness patients.

A rheumatologist is the doctor best suited to help you manage your symptoms and rule out other causes for your illness. There are now three prescribed medications to treat the pain of FMS. Lyrica is one them. The most common complaint about Lyrica seems to be rapid weight gain. Unfortunately, many rheumatologists are not proactive about changing medication when this problem becomes apparent. The second option is Cymbalata which is an antidepressant. Cymbalata addresses both the pain and depression that usually accompanies FMS. I use that myself and have had good results. The newest medication has been used in Europe for decades. Savella (also known as Milnacipran) was approved for use in the USA by the FDA last year. Many people seem to have good results with it. It takes time and a lot of tinkering to find the right dosage and medications to make you feel more comfortable. You might want to consider finding a pain specialist with an interest in FMS. I have a rheumatologist and a pain specialist. You can call your local hospital physician referral service and see if they can recommend someone.

Stopping your medication was absolutely the wrong thing to do. The longer a chronic pain cycle continues, the harder it becomes to stop or manage. It takes time and a lot of tinkering to find the right combination of medication for any individual with FMS as our symptoms all vary.

Have you been tested for a vitamin D deficiency? This is done with a simple blood test. Many people with FMS are deficient in vitamin D. I'd also like to suggest that you be tested for gluten sensitivity. The most accurate result is obtained using a stool sample. It is entirely possible to be gluten sensitive without having Celiac Disease. Either of these issues can also cause widespread pain.

One of the reasons you are so sore and tired is a lack of restorative sleep. FMS interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles need deep sleep in order to repair themselves from the day’s activities. No deep sleep means higher levels of pain which rapidly becomes a vicious circle. Restoring some level of deep sleep is a crucial part of treating FMS. You should be on a sleep aid like Amitriptyline to help with this issue.

Memory issues or "fibro-fog" are also a common complaint. You could try a supplement called "phosphatidylserine" which comes in varying strengths. This was recommended to me by my nutritionist. My memory is pretty well intact except when I am really affected by fatigue so I only use 200 mg. You could try a higher dose. You should be able to find this item at any decent healthfood store. Make sure that you understand how to use it and any risks associated with taking it.

Some people with FMS are very sensitive to touch. This is called “Allydonia.” Pressure from clothing, bra straps, watchbands and anything that touches the skin may be uncomfortable. There is no solution to this issue other than to find clothing that feels comfortable. I have Allydonia but some days I am less sensitive and can wear whatever I want. Other days, I stand in my closet wishing that my nightdress was appropriate day wear out in public.

With regards to diet, if you use anything containing an artificial sweetener, get rid of it. If you require a sweetener, use something made from the nontoxic Stevia plant. Truvia or Sun Crystals are available right alongside the other sweetners at the grocery store. Avoid deep fried food, lunchmeat and wine (nitrates) as they will probably increase your pain level too.

The key to living with FMS is learning to pace yourself. If you overdo anything, the payback can take days or even weeks to get over. You can still do many of the same things but you have to think outside the box. Break tasks down into more manageable increments. Get plenty of rest, watch your diet and eat high protein to prevent huge energy swings. If I have an event that I want to attend, I "save up" energy by reducing other activities. Even then, I may have to curtail my participation. But, in my estimation, something is better than nothing.

I have bursitis in both shoulder and hips so I can really sympathize with your level of discomfort. Bursitis is not something to be ignored and needs to be treated. If your doctor is not offering any treatment, that is a big problem. You could have an injection of cortisone in each area to relieve the inflammation. I am not a big fan of steroids so using it once would be as far as I would go. Prolonged use of cortisone causing tissue damage. And, no one with FMS should be using an steroid due to the effect on the immune system unless the need is critical. Another recommendation I can make is fresh pineapple. Eat as much of it as you can stand. It contains an enzyme that helps break down bursitis. Please remember this is not an overnight cure but it will help. It you hate pineapple, go to the health food store and get the enzyme in a capsule form to use.

Not all doctors/rheumatologists are created equal. If you want to get a second opinion, go to the National Fibromyalgia Association website to see a list of fibro-friendly doctors in your area. Be sure to take a copy of your medical record and current tests with you to save time and money.

And finally, you are not alone. This is a great site for support, information, to ask questions and just vent. I hope that my comments are helpful to you in some way. Take care and God Bless.

 

axxie - September 24

Hi Dahlia, Welcome to the forum, we aim to help, but we are not doctors. No need to panick, I know it's scarry to have fibro and not know what is happening to you. But no need to panick it's time for you to get better. First of all, the pain you are experience is what it is. Everyone feels the pain differently and right now, the way I read your email, I think you are both exhausted, therefore lack of sleep and feeling the anxiety of the what the hell is wrong with me.

You mentioned that you have stopped your medication, that is a no.no. I do not know what medication you are on, but trust me, if they were prescribed to you, there's is a reason. Two you need some sleep, probably some of the medication you were prescribed is for sleep?

I understand your frustration, but your husband, will be there for you. Explain to him, you do not know what is going on with my body, but I feel really bad that I'm so sick, but with time, I"m sure things will get better. As for sex, well, everyone is different, it's the least of your problems at the moment, your husband should after all understand.

As for dietary, there is a few things you should do for yourself. no coffee, teas, or colas, eat wholesome foods, be careful or try to eliminate all processed meat. A glass of wine, may help you to relax, but you may be surprised, that you hurt more the next day, because of the histamine in red wine. So if you have this common problem, take your allergy medication.

Take a hot shower or a hot bath, this help wonders for your body and mind. Take it easy, you can't do everything at the same time. So choose one task, if it means to play with your kids, then you do that, kids are resilient, but they also need personal interaction with their parents.

As for cleaning and doing all the chores, heck some days it works and other days it just doesn't except the fact, there will be days where it just won't happen. You may even want to do a game with the kids, who picks up the most in there bedrooms, or lets go play in the tv room and the one who picks up most toys. (I'm sure you get the picture on this one).

As for a blood test for fibro, there is not any, fibro is diagnosed by a list of symptoms and tender points and source of elimination.

As for having your liver enzime elevated, so is half the population, it could mean nothing, if you happpen to be very skinny your enzime of your liver will be higher because your liver happens to hit the wall of your body. If you happen to be fat, expect have your liver enzime to be higher, if you don't eat well, meaning you eat alot of fat in your diet, your liver enzime will be high, depending on what medication you were on, or on, expect your liver enzime to be high. If your doctor is not concern, let it go.

Take it easy, look at what fibro is, and remember, the weather, what you eat, don't eat, and if you stress yourself will all give you more pain.

If you are interested, you should have a complete multi-vitamin, take with your breakfast, as for taking other vitamins, I would just give you advice to take a fish oil and E formula.

Good luck my dear, and do write to tell us, what medication you were prescribe, I'm sure lots of others will be able to give you other advice.

 

duhda75 - September 25

I agree with Fantod and Axxie. Don't stop taking your meds. They were prescribed with your best interest at hand. Some meds take longer to take effect than others. So, it might be you need to give them more time or possibly your on the wrong doseage or perhaps just the wrongs med for your body. Everyone is different and responds different to meds. Also, It sounds like u have a wonderful family and a understanding Husband. Maybe he and the children are able to help out. My Hubby is gone about 90% of the time. So, I have my children help out around the house. They can only do so much as they are 7,5,2. But, I pay them a small amount according to the task or chore they do. It really motivates them because they actually get something out of it. Also, We do the p/u 10 second tidy game. We all have good days and bad days and I want to die day, LOL. As far as the housework and cleaning. I just make it a priority to make sure my kids are feed, the dishes are done, and that my kids have clean clothes. I take lots of breaks as I have other conditions other than fibro. And, well if the house is messy than so be it. Anyone that knows me or loves me isn't gonna care how u housekeep. You have a disabilitating condition. So, just figure out what works for you, and if you have help take it....because somedays you will need it.
I hope this helps a little. There are alot of great educated people here, and we are here to support each other:0)

 

Stacey373 - September 25

Hi Dahlia - I'm going to keep this short (at least for me! LOL) I'm not feeling well, but I saw your post and had to reply.

I know how hard and frustrating it can be to deal with this illness. I was diagnosed almost 2 years ago (Dec. 2008) but have been dealing with this for MANY years. This illness is physically AND mentally debilitating. I've learned over time that "fighting" this illness and all the symptoms that go along with it with only make you feel worse.

What I mean when I say "Fighting this illness" is not taking your meds, pushing yourself to keep going no matter how you feel, and basically "denying" you have this illness in general.

There is a list of "regular" medications that I tell everyone with Fibro that you should be taking. The most important ones are an anti-depressant, sleeping meds, and pain pills. Alot of people also take neurontin (nerve blocker) and muscle relaxers.
As Fantod said, you need a blood test to check your Vitamin D levels. Most fibro sufferers are Vitamin D deficient. My doctor has prescribed me a very strong Vitamin D that I take once a week and I also take OTC Vitamin B Complex and Magnesium Oxide.

As for your SI joint pain (sacroilliac)...I know ALOT about how that feels! My SI hurt so bad that I used to be in tears from trying to stand to do the dishes for even a few minutes. The SI is a very small "pocket" that has a bunch of nerves that go through it...if it gets inflamed, it will pinch down on those nerves and cause severe pain from your lower back down your leg and into your feet. You need to take ibuprofen to help with the inflammation and you also need to take prescription pain meds to ease the pain enough so you can get up and move. I know how much it hurts to do this, but the worse thing you can do is sit and not walk around. I've learned over the years that if I sit too much, my SI will start hurting, and that's when I make myself get up and move so it doesn't get worse.

Stress and not getting the sleep you need will also make Fibro worse. I know this is easier said than done, but you need to find ways to relieve the stress in your life. You also NEED some sort of sleeping medication so you get the deep sleep and the hours that your body needs each night.

And lastly, one of the most important things I've found in the past few months that helps me to deal with this horrible illness is a "Positive Attitude." I know that sounds weird or whatever...I actually used to immediately "shut down" as soon as someone told me this! But the truth is...it REALLY does make a difference! I've learned with a positive attitude to appreciate the days when I feel good and not to push myself harder to get things done when I feel good. And to accept the bad days and not feel guilty when I can't do very much on those days. And I ALWAYS try to remember that the bad days aren't going to last forever (even if it seems like they are at the time)

Okay...well I guess I didn't make this short after all! LOL I'm glad you found this site. Everyone on this forum are very nice and supportive. whether you need advice or you just need to vent...we're all here to help and listen. Take Care, Stacey :o)

 

emma lou - September 25

ive just started wiv this to even tho ive had it frm wen i was 23 in my left arm which is still there frm neck down to my hand... im now 26 and got told i hav this end of last year afta 2 n half years not knowing what i had. i had to finish my job with toddlers cos i cud no longer pick them up.. which i then came depressed and was out of work for a year and been up n down with this... now its going through my body left side of face, back, buttocks n legs mainly the pain is neck arm n legs face just numb but can b painfull in my eye.. my pain is manily in my muscles not joints.... i get tired and loss energy.. started taing vitiman tablets through day o tho i feel tired n in pain i feel bit more energy and body feels better.

ive come long way afta 6 months ive got rid of most my depression n seen i theapist which u could do just tell ur doctor u wnt to c someone. It help me and i got bac into work part time workin with older children...

im frm uk and they've started doin 10 week classes at my local hospital doing a hour of slow basic excerices i have to do once a day which is helpin very much as i can move my joints more n feel bit stronger.. i do NOT take ne medication as i hav got use to my pain n know wat i can n cant do... doctors say pace yourself and this helps me very much eg.. hover a room for 5 mins then rest then if u finding it gettin easier do 10 mins or one room i can feel my pain so i hover untill my pain starts then rest...

on diete side i drink plenty of water.. do not drink pop, tea, coffee, achol that as caffine in at this does not help
o tho i still hav drink every now n again its life n i wont let it stop me.

doin fast activie excerise does not help u do realxtation techques, streches.. like yoga nothing fast.. massage good but tell them to do it gentarly lol as im sensertive to touch.. n my sex life lol up n down wen bed time comes no chance for me lol i hav to do it in day if i can lol...... hope this helps abit ??

my problem wiv my fibro is i want to have kids as ive just got married n im scared that im not gona b able to angle the preancy and lookin afta baby afta.. sorry bout spelling..

 

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