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stphotopro posted:
Hi there. I was on the website looking info. on Pain Management help when I came across your community. I'm so happy to be able to exchange ideas with others who understand my frustration with daily pain due to Fibromyalgia. It's so good to have the opportunity to talk to people who understand.
Fibro has ruled my life for 25 years, but for the past 5 years it has ruined my life. I'm a 65 yr. old widow (lost my husband to cancer 4 years ago) living alone. I am at a 6-7 pain level seven days a week as soon as I open my eyes in the morning. Sitting for only short periods of time increases the pain level to 10+. That makes driving in a car for any reasonable distance very painful. Standing and walking for moderate lengths of time can do the same (so much for a Girls Day Out of shopping). I would love to return to work (publishing business) part-time, but that's not possible. I have lost count of all the doctors I have visited over the years looking for help. I've sought out numerous treatments and facilities hoping to find help to eliminate the pain, exhaustion, migraines, irritable boul and sleepless nights……opiate drugs, two stays at Mayo Clinic, Johns Hopkins Hospital, Pain Management Programs, Injections, PT/Massage, Chiropractor Services, Acupuncture, Biofeedback, Cymbalta, Lyrica. Nothing has helped I' sure I'm not listing everything, just can't think of all of them right now (Fibro Fog). A renown Rheumatologist at May Clinic gave me a preliminary diagnosis of MS after his extensive examination. But to his surprise the one important test, a spinal tap, came back normal. He could not give an official diagnosis of MS based on the test results. But, he suggested I have a repeat spinal tap and brain scan in 2 years for any changes. Haven't done it yet. However, he made it clear to me that the diagnosis of MS wouldn't be the only cause of my problems. Fibro was definitely a major factor. In 2010 I ran out of fighting power both physically and emotionally so I gave into this insidious disease and spent 9 months in bed on pain drugs. Unfortunately that only brought on additional serious medical problems…lost 45 lbs, became mal-nourished and my adrenal gland shut down. Ended up in the hospital for 7 days trying to deal with all that. Not good! Obviously that wasn't the answer. In the end, the doctors and physical therapists have told me I have Fibro and "it is what it is". I should spend my limited amount of energy on learning how to manage the pain so I can live a semi-active life rather than trying to find a miracle cure with hopes of returning to the active and pain-free life I once enjoyed. That's a hard pill to swallow. I'm convinced as part of my pain management I need to consult with a Psychologist who specializes in chronic pain therapy. I admit there are some days I just feel like I can't deal with all of this any longer (even though I'm taking anti-depressants). Every day I seem to be engaged in a war with my body. I need to voice my concerns with someone who can lead me into a more positive way of thinking. I'm searching for someone, but no luck. I've made many requests but no one seems to be able to connect me with the right person. My feelings are desperation, angry and fear of the unknown. I'm also looking into how vitamins and supplements might be able to help me. Any suggestions? Thanks for listening. I'm inspired by your posts. Sorry for going on and on and on. Wishing you good days.
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dollbug responded:
Hello and welcome.....MiMi in NC....sounds like you are dealing with a lot right now....I am glad that you found this unique FM support group....we are a good group of FMers here....trying to reach out to those who need support...(as we all do)...with all that you have been through I can understand how hard this much have been on you...

There is no magic pill though that will cure us that I am aware of....and probably little or no hope of actually returning to an active and pain free life....BUT...there are certainly *tools* that will help you cope better...it does take a trial and error process though to figure out just what the right combination of things will help you...so hang in here and learn all you can from this site and from others who also face the wrath of the dragon, aka FM every day...

We are so lucky here to have not one, but two doctors on board...Dr. P and Dr. Margaret (see the top right hand corner for more info on them)...you can also direct questions to them by putting their names on the subject line of your post and they will get back to you with a reply...

We, FMers, do understand what you are going through...as most of us have been there done that...

I am one of the FMers here who has learned how to *control my FM pain by taking vitamins and supplements and doing other things as well*...no...I am not pain free...but I am so much better than I was in the beginning...I take the following vitamins and supplements: Fibro Response (found at vitamin store) or Magnesium Malate (vitamin store) either or but not both...sometimes I just alternate them....Omegas, Super B Complex, a good multi vitamin with extra D, Calcium and others since I have other health issues as well.
These are the ones which help me cope better...

I also use a heating pad as needed...stopain spray (walmart) as needed...watch what I eat and drink plenty of water...do gentle exercises or stretches every day...
and most of all learn how to pace, pace and pace even more...I also have the chronic fatigue....having no energy is not fun at all...

Try to also limit any stress that you might have. When I do have a bad day...I try to take a hot shower using lavender bath salts in a stopped up drain right before I go to sleep....this helps my body to relax so that I can sleep better...

Getting enough sleep is so very important for us too...
(so I have found out) I also have to say that I sleep in a recliner...not by choice though...but this does make a BIG difference in my pain...some people have tried and use a foam mattress topper....I tried this but it still did not do what I needed...

I would like to encourage you to be sure and talk to your doctor about checking your Vitamin D level....if you have not already done so...low Vitamin D can cause some of us to have additional pain...(it did me)
and it can also affect other illnesses as well.

OK...I think I have shared enough for this time...

I would like to say that when you post again....please make paragraphs since it is hard for some of us to read a really long post...(my eyes are not what they use to be)...

I hope you will post often, ask questions or make comments about things you have found that has helped you cope better...

One last thing...I did want to mention....staying in bed is probably the worst thing that I have found to do....I get up no matter how bad I feel....I move...some days I am really slow...but moving helps keep our muscles from getting so stiff...

Take care and good luck...


MiMi






IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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xperky responded:
Hi stphotopro, and welcome to this group of FMers who communicate freely about FM and their lives! I hope you will find a little of the positive feedback you are looking for.

I'm still fighting the diagnosis too. It's hard to believe that so much pain and fatigue can be caused by something there is no concrete test for! I do feel better on days I listen to my body and don't let my emotions get me all upset. I use meditation and distraction to help. Last year I took up knitting and crocheting for new distractions and am really enjoying that. I had to give up bowling, much of my gardening, and a clean house, and that bothers me. Like you, I am at war, but learning how to write peace treaties...LOL.
With Compassion,
Margaret
 
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booch007 responded:
Stphotopro,

I didn't look at the return threads from other fmily here, but I right away saw a couple of things.

Things got worse as the closer you were to the loss of your husband. That was a big hit to your world. You lost a jjob there a distraction (as well as your lifemate). This distraction of self is BIG medicine........

Can you get out to a seniors center? Try a few, as getting a fit is as important as a fit for the doctor. This will get you
re-connected to a group of distractions and support system, NOT THAT THEY should carry your woes. But they all have aches and pains too and the minge is good medicine.

You very well can still be mournig the loss of you other half. Do you have children, an extended world to enter and refocus your thoughts? I find when around the girls (GC) I don't think about me and mine*..just them, after I leave the pain is up but it is worth the efforts made.

Get MAD and not SAD....get out and try a walking program for yourself. A CD player in your ears or iPod full of music and go for it. Start small and get out in the AIR and SUNSHINE. being a shut in is the worst for you. To crawl up and be lonely makes this the only focus you have. I can do that too. I am alone alot with the DH out at our store everyday......I can get low, so I make projects and keep the list going.

The world has gotten small for me, but that is fine at this point. I can't handle more. My crowd of friends have moved on *without me* as I couldn't keep up and saying no* gets them to stop calling.

My choice now, so I have control over the day.

The answer for alot of us is not always in a pill. Look in the resource section (to the right) for the *Members Toolbox, it is filled with ideas on how we survive. My med of distraction is stronger then the meds I swallow.

I also felt like leaving and couldn't think of my life being like this forever.....but God sent me my first Grandaughter ON MY BIRTHDAY...all at the hospital said " God doesn't make mistakes, he is telling you something!" Well it is as powerful now as then. I HAVE TO STAY. I have work to do.

So do you.

There is something for you to do and give to someone. Do you know that when you help another you get that back twicefold (in good brain chemistry for pain relief)!

Maybe in that senior center is someone with a problem or feeling that no one gets...BUT YOU. And they are waiting to meet you! That you will save them.... and playing bingo or taking a small trip with all of them will fill your day with joy....

Wish we were close, I would bring you in the door and help you through this. Make sure you are eating well and hydrating those muscles well (with water) (not just coffee or pop!).
Our bodies can be better if we give the right tools to them. Not a cure but better.............always looking for better.

Good luck and try the center and the toolbox........

((((hugs))))) from me. Nancy B
 
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squarley responded:
SO GLAD YOU FOUND US, I COULD OF WROTE EVERY THING YOU DID YOU COULD ME ME , I HAVE ALL YOU HAVE AND WENT THROUGH IT ALL ,I AM 64 AND HAD FM 20 YEARS OR MORE, YOU DO LEARN TO LIVE WITH IT AND FIND THING TO HELP ,I USE MASSAGE , HEAT ,STOP PAIN RUB, XANX AND OTC PAIN RELIEVE, EVERY DAY A STRUGGLE , I HAVE LOST A HUSBAND A BABY GIRL AND NOW MY 37 YEAR OLD DAUGHTER ,DID IT MAKE ME WORSE ,YES STRESS WILL DO THAT TO YOU ,AM I ANY BETTER NOT MUCH, BUT ALL THE ADVICE HERE IS CORRECT AND IF YOU CAN DO IT PLEASE TRY FOR SOME TIMES THE SMALLEST THING HELPS, I HOPE YOU HAVE SOME SUPPORT, I AM HERE FOR YOU I UNDERSTAND, SORRY FOR THE CAPS, MY EYES ARE ALL WAYS BLURRY,PLEASE STAY WITH US LET US HELP YOU, COMFORTING HUGS, SQUARLEY
 
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Randm2220 responded:
Welcome to the group! Glad you found us.

I understand the emotions you are going through. We have all been there. I saw right away the corolation of fibro hitting and your husband passing. Trauma can bring fibro on.

Your world has changed and the emotions that you go thru are normal. We have all been there. Hang in there!

I try to keep active by gardening and doing crafts. I lost my job earlier this year thanks to fibro. I am 46. I take lyrica, cymbalta, trazadone, cyclobenzaprine and Tylenol 3 as needed. I still have pain.

I hope you find the right mix for you.

Keep on posting! We are here for your frustrations as well as your successes!

Hug Kim
 
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Anon_2912 responded:
Please try a Psychologist....They can be very helpful.

No shame in seeing one.
 
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katmandulou responded:
Welcome to our group!

It makes me sad when I read how so many in our FMily are still hurting after so much time. Each of us has a different version of this beast - what MiMi calls "the Dragon" - and no two people respond to the same drug the same way. What makes me feel better might not help you, sad to say.

Do you have children? If not, nieces/nephews, friend's children? Could they help you? Have you asked? Many people wish someone would 'just stop by and help out', but if you don't ask, they won't. Someone who checks in on you regularly could lift your mood, and a lunch out even once a week could do wonders. It helped me!!!!!

Call your local hospital or state mental health advocate for a list of psychologists who might help you. Calling around can help you find a good fit. A compassionate office manager probably works for a compassionate doc.

I wish you better days - have the best day you can possibly have! See you another day,
Lou
 
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stphotopro replied to katmandulou's response:
Thanks to all of you who responded to my first post in the Fibro Community. Your suggestions and well wishes are greatly appreciated. I hope someday I can return the favor.

Yes, I do have a great support group in my family. I have two daughters (they live about 35 mins. from me) who are married. Each daughter has blessed me with a grandson and granddaughter. Their ages are 8, 10, 10, & 13. They are the loves of my life. They bring so much joy into my life. When I'm having a bad I'll call them just to hear their sweet voices. They always say their sorry that my back hurts. My daughters have seen me through the thick and thin of my scary and painful journey since my husband died. They haven't left my side. One daughter spent 2 weeks at Mayo Clinic with me, and the other daughter went to Johns Hopkins Hospital with me. They have taken me to many, many doctor visits and late-night emergency room visits. I know they are there if I need them, but I try not to overload them with extra responsibilities in addition to the many they have with their families and jobs. I know they are frustrated not being able to find someone or something to relieve my pain. They often call me with some new idea they heard or read about.

I have a passion for gardening. I have a flower garden in the back of my house, one in front of my house as well as 2 rose gardens. I've acknowledged that the days of spending the entire day outside trying to keep ahead of the weeds, bugs and overgrowing plants is a thing of the past. I can do only a little each day. If I push myself"026"026I pay the price (and I have!) But, I still get great joy from all my beautiful flowers. My other passion is making jewelry. I make pieces for friends and family and sometimes exhibit my pieces at craft shows. Unfortunately the craft shows are a thing of the past. Just can't sit behind a table all day, and standing or walking around doesn't stop the pain once it starts. The chronic fatigue also plays a big part in hindering me from being active for long periods. I live in a DelWeb, Sun City 55 Community. There are so many social things to do here, most of which I can't do. Going on bus day-trips to museums, plays and musicals are out of the question. Being part of communities social gatherings for playing cards and board games isn't possible because of my short tolerance for sitting. And once again, standing up for a few minutes doesn't help. But, I do belong to a few neighborhood clubs; Sunday night cards (every other Sunday), Mexican Train Dominos (every 3rd Wed.), The Women's Luncheon Group (every 3rd Thurs). My friends in these groups are very understanding of my pain tolerance, and don't mind that I always drive alone so I can leave earlier then the others. They said they don't want me to do anything that brings on more pain. They seem genuinely concerned about me. Nice group of people.

I have to admit, being with friends is a good emotional uplift for the moment, but the physical pain I have to endure while we're together is sometimes more than I can handle. I often decline invitations because I just can't handle more pain and the future consequences.

There I go again, on and on. I didn't write this in one sitting. I took many breaks and had to lay down at one point. But I was able to finish my thoughts and that's what counts.
 
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itmatsb responded:
You mentioned a lot of remedies that you have tried. So sorry to hear that none of them have worked better for you.

In addition to some of the great points made by others, have you tried Savella? It came out in the last couple years or so. Some people have said that it took away their Fibro completely! I couldn't take the side effects myself which was a huge disappointment.

Also the remedy that most experts in Fibro say is the best treatment for Fibro is that some exercise can help your Fibro. You would need to start out with just a little bit and build up slowly. But don't overdo your exercising either.

Also a Migun bed helped my Fibro tremendously. It's a type of massage bed, but different with its jade beads and the way it works on the body. I felt like my legs were suddenly like I was as a 25 year old. (That was before I had a stroke which has greatly impacted my life in other ways.)

But those are some other suggestions that you might try.

BTW, I've suffered from tremendous pain, not just from my fibromyalgia, but far more so from severe 24/7 migraines caused by my stroke. I also still have stroke pain as well. I was nearly suicidal at one point, because I felt I had no life and the pain was horrific. The doctor told me to increase my anti-depressant (Effexor) and to get therapy. I never got to the therapist, but miraculously 5 weeks later, the depression was completely gone. Still a terrible life, but no longer depressed. (The Effexor also acts as a pain reliever.) But I still have my down times, but I have found that my only useful therapy is to focus on the positives in my life.

So you might try to get better anti-depressant help by talking to your doctor, who might increase your anti-depressant or change it or add another medication to it.

I believe that a better life is ahead for you. Glad that you wrote into us. Really wish you the best.
 
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itmatsb replied to itmatsb's response:
P.S. With the Migun bed, for any of you, you need to try it in one of their stores as many times as possible to make sure that it's really going to work for you. I literally spent time on the bed almost every day for 2.5 weeks. What a difference. So I bought it with delight. But don't just buy it.


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