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relieved to admit
10 Replies
livinwithit - October 3

I grew up watching my mom become a victim to her pain, beginning the 1970's when FMS was not recognized. Over my life, I resented her for focusing on it and blaming others (me) for it. She did not handle the every day stresses of life and found her family (or anyone else for that matter) was to blame for the cause of her pain. As I have had the unfortunate symptoms of FMS since I was a young girl, I have refused to believe my issues were the same as my mom's--I would prove that one didn't have to feel that way if they just had a healthy attitudes and a healthy lifestyle! FBS was a dirty word in my vocabulary, and was associated with the drama of my mom's life. Well, now at 44, I give. I went to a new ob/gyn (she is a star in town) and she recognized right away my symptoms as FMS, although I would never have pointed to the possibility. But I can't refuse anymore--I'm too tired and I hurt too much. In some way, I am relieved to admit I have FMS. Over the years, I have tried just about every method for finding the "answers" to my issues, and have tried just about every method for dealing with my symptoms. Right now I have the worst symptoms I have ever experienced. I wanted to get started here to dialogue with someone who understands, but I am tired and foggy today--been up since 3:30 (my newest symptom--insomnia :) I'll write more later. I'm so tired of being inconsistent. I guess I'll see how I feel when I wake up tommorrow...hopefully it will be at a reasonable time :)


Fantod - October 3

livinwithit - Welcome to the board! I'm not sure if you are on medication for FMS yet or how up to speed you are on the latest treatment. So, I'm going to give you a crash course on how FMS affects your body and emotions along with some solutions.

I work with a nutritionist who was treating people for Fibromyalgia long before it was recognised. I can not imagine what your mother (or you) went through. FMS is inherited and does run in some families. My Dad has many of the conditions associated with FMS but not FMS itself. I was the lucky one. Even now, there are still doctors who think that we are all neurotic lazy whiners. You are very fortunate that your ob/gyn recognized the symptoms. I've been completely disabled due to FMS and underlying issues since 2007.

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, skin problems and a host of other conditions. Most of us have underlying conditions such as degenerative disc disease or arthitis as well. 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. Keep a log of your symptoms prior to your appointment so you can show the doctor what you experience on a day to day basis. You may want to take someone with you to the appointment to help you remember what was said during the visit. To find a fibro-friendly rheumotologist you can use the National Fibromyalgia Association website which has a list of health care professionals for each state. Or call your local hospital physician referral service.

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. Patience is key when starting a medication regimen for FMS. It can two weeks or longer before you start feeling any relief.

The longer a chronic pain cycle continues, the harder it becomes to manage or stop. You do need to see someone and start a prescribed medication regimen. I note that you maintain a healthy lifestyle. I use a mix of conventional and holistic medication. But, I started on prescribed meds and once my symptoms were more manageable, I started reducing some medication and replacing it with homeopathic supplements. It is very important to take your medication as prescribed. Some of them can not be discontinued without being weaned off of them gradually. It is very important that you discuss any problems that you may be experiencing with medication and decide with your doctor what should be done. If you are taking supplements, make sure your doctor and pharmacist have a complete list.

Also, You might want to consider finding a pain specialist with an interest in FMS. I have a rheumatologist and a pain specialist that work in tandem with one another. As I suggested, you can call your local hospital physician referral service and see if they can recommend someone.

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. Melatonin and/or Calms Forte may also help.

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. You should be able to find this item at any decent healthfood store. Or, order it online from a company like Puritan's Pride which has regular sales. I use the latter for my supply - they call it "Neuro-PS." 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, 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 fancy.

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, bacon 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.

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.


livinwithit - October 4

Thank you for welcoming me! It feels good already to be able to talk freely about something that no one in my daily life can relate with. I appreciate very much that you took the time to give such detailed information about FMS.

It may take me a while to "warm up" to some of the treatment options (if necessary) since I have spent a lifetime distancing myself from my mom's obsessive approach to her condition.

My goal is not to end all pain. It has always been a part of my life and I guess a certain level of it is my "normal." Since I have always had such sensitivity to chemicals and medications, I stay away from them. The side effects have proven to be more trouble than helpful, so I just don't go there usually.

I have tried many alternative/natural methods over the years to find the "right answer" or to just "deal" with the discomfort. Here are a few I can think of right now--candida diet, vegetarian diet, vegan diet,alkaline diet, changed amalgam fillings to composite, chiropractic, worked with a naturopath, homeopathic approach, supplements, colon cleanse, yoga, massage, exercise, taking daily naps. I have read extensively over the last 10 years about natural health matters. All of these things at one point have given me relief for short or long term. It seems I kept expecting for the new thing I discovered to be "the" answer, but I'd always be disappointed when it wasn't. So I kept searching for the next idea.

I will be watching this group and studying the website as I settle in to this new FMS reality.
I want to learn everything I can to help me make decisions about my approach to management of FMS. So thank you again for letting me look into this world, guided by the veterans!

I am considering involving a friend who is a rheumatologist in my town at a big ten university. I say considering, because I'm not sure I want to lose a friend if all doesn't go well. I do want to probe the Vit D question--thank you for bringing that to my attention.

Amazing how I can be so depleted this morning and feel improved tonight...the unpredictability can make a person crazy, can't it!

More later...


Fantod - October 4

livinwithit - I'd like to make a few additional comments in response to your reply.

I'd like to suggest that you purchase a new book called "The Pain Chronicles" by Melanie Thernstrom. It might give you some valuable insight into what your mother was dealing with back in the day. And, it will give you a better understanding of how chronic pain patients are managed these days and how important it is to be proactive about your care.

Also, have you tried the spice Curamin for pain relief? I use a highly purified form in capsules manufactured by Terry Naturally. I take my prescribed medication and add Curamin for breakthrough pain. The combination works pretty well.

You might want to consider exploring having an Elisa/ACT blood test done to indentify allergies or sensitivies that are triggering your immune system. You can find information about this test online. We can not post Internet links on this site. I took this test and discovered that, among several other things, I am highly allergic to D & C Green #5 food colouring. I had no idea since I wasn't getting a rash or any overt reaction. At the time, I was experiencing terrible leg pain. It turned out that the shaving gel I used every single day had D & C Green #5 in it. My leg pain has diminished since I eliminated the shaving gel. Other things that were triggering my immune system included flax seed oil, green and black tea, food preservatives, garlic, insecticides and a bunch of other stuff.

It is very common for people with FMS to have multiple chemical sensitivities and problems with medications. I happen to be the carnary in the mine. I have to keep a running list on my computer since I could not possibly remember everything. I treat all medication like cyanide.
It is possible to have medication reformulated by a compound pharmacy to better fit the needs of an individual patient. Compound pharmancies are every where. If one is not convenient to your home, the script can be called or faxed in and the medication mailed to you. I use a compound pharmacy on a regular basis. I have also had to use it to accomodate the needs of my elderly animals.

I like to gently suggest that you try to keep an open mind about a treatment plan for FMS. Long term chronic pain is proven to cause cognitive problems. The sooner you see someone and explore your options the better. I hope that my comments were helpful to you in some way. You are absolutely right about the unpredictability of this syndrome. I had a decent day yesterday and not so hot today...go figure. Take care.


livinwithit - October 5

Many thanks! I have taken note of your many suggestions and will be looking into them. It will take time to do the due diligence here.
I will surely give a report on how things unfold.
I am sorry today was a rough one for you--I hope for a better one for you tomorrow :)

BTW--my two big chemical no-no's I discovered over the years are Aspartame and MSG--they are like poison to me--headaches that make me want to crawl in a hole and I must drag my body around as it feels like it's been pumped with glue! Today we had an insulating foam put in our basement and smelling the fumes makes me feel dizzy and weak and not able to think clearly. It drives my husband CRAZY because these kinds of things don't seem to effect him at all--he doesn't understand why I "make such a big deal of it."


Fantod - October 5

I get it totally. I was just treated to a well meaning lecture from my partner about the need to stretch, try aqua therapy and generally do more.

I just wanted to stick my fingers in my ears and say la-la-la until he was finished. Aqua therapy is out - I'm allergic to chlorine. And, he knows that. I'm more active now then I've ever been since I became ill by sheer force of will. I want to purchase a walk in jacuzzi tub but finances will not allow that at the moment. I can not get into or out of a regular tub without assistance and great deal of discomfort.

The lecture was just because of I've had a couple of terrible days and he is worried. But, after all this time, it is frustrating to have to repeat myself as to how this infernal syndrome works and what I can or can not tolerate. I don't know if this is just a male thingee - the not listening part or just part of the wider circle where no one gets FMS except the people who have Fibromyalgia.

Keep me posted on how you are doing. I'll be interested to hear any developments.


Stacey373 - October 5

Sorry to break in on your guy's conversation...but I just had to reply to Fantod talking about her partner "not getting it."

No matter how sympathetic and understanding my husband has tried to be lately...he will STILL occasionally give me his "speeches." He's convinced that if we "believe" we are in pain, then it will get worse. Like it's all psycho-semantic and if our attitude changed, we would feel better. he also just can't seem to understand why I can't exercise (or feel worse doing it) and be more active. He thinks if I was more active I would feel better. I'm in the process of trying to find a cheap treadmill. I've been walking this summer, but the rain is going to start any day and I won't be able to walk outside again until next summer. My husband insists I should get an elyptical because that way I can "work out" and I keep trying to explain to him I don't want to work out...I just want to walk a little. Why is that so hard to understand??? LOL

Ugh....people who don't live with this like we do just don't understand. But I can't complain too much...could be worse...they could be totally unsympathetic and un-supportive. Take Care and I hope everyone has a good day, Stacey :o)


Fantod - October 5

Stacey - Thanks for your comments and support. As we all know, sometimes just getting out of bed in the morning is exercise


duhda75 - October 7

I agree with Fantod. I think it is a "Male thing", LOL. Although, I feel lucky my husband tries to get it. But, really there is no way to "get it" unless you life it. My identical twin sister also has FMS. So, we talk to each other and try to be there for each other as much as possible, but we live in different states. Which, also makes it hard. I feel really bad for here because my bro-n-law doesn't believe in FMS and refuses to be supportive because he can't see it.

Have a great evening:0)


crafter8 - October 7

omg, I can so identify with you, friend. My mom is identical to you also, and I also said I would not become her. Lo and behold, I too inherited the Fibro. The difference in myself and my mother is how we handle this syndrome. I read all I can about it, I use as much herbal and natural supplements, and recognize there is not a cure. I do wish I could find a fibro friendly specialist in our area, I have found a homeopathic dr. to try. A positive attitude goes a long way and acceptance also!!


Stacey373 - October 7

I can't imagine having to deal with a partner who doesn't even believe there is something wrong. That has to be the hardest part of this illness to deal with. I think I actually felt worse all those years that I was trying to get everyone to believe me. Even though now I have more physical pain and problems than I ever's still easier to deal with it because my family is sympathetic and I'm no longer using my energy just to get them to understand.

I sort of understand the "Mom thing" too. My Mom is the type of person who always has to be "worse" than me. Even to the point of pretending she has Fibro now. But then she in-validates me by saying if she can do this or that with this illness, then why can't I? It does get frustrating trying to "separate" yourself from your Mother's problems. but just remember we are NOT our Mom's no matter how much we feel like them at times! LOL

Take Care Everyone, Stacey :o)



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