Skip to content
Broke and frustrated!?!
avatar
voycondios posted:
Hi, I have had FM for about 16 years, I think. Originally when the symtoms started my family doctor ran a BUNCH of blood tests, x-rays and cat scans. Nothing showed up so he just told me the pain and migraines were from stress and working too hard. Many years later my husband read an article in a magazine which talked about FM and some of the symtoms, he showed it to me and said "That's You!" By then my husband had lost his job (and insurance) so on my next visit to the doctor I asked if he could check to see if I might have FM (instead of Lyme disease, his theory at the time) He looked me straight in the eye and said "you don't have that." I found out much later that not all doctors 'believe' in FM, so I trusted his knowledge.
So for years I learned to deal with the new reality I lived in, and took my husbands muscle relaxants and anti-imflamitories for my migraines. For awhile I had an OBGYN who believed me when I told him that those two drugs REALLY saved me during my cycles and would willingly write the prescriptions. Then he left the state and I was back to square one.
Finally I found info on the internet and started to educate and 'treat' myself with better diet, vitamins and stretching. Works good sometimes, but when it dosen't, my life is a nightmare of pain and no sleep. About 3 years ago after dealing with 4 months of serious bladder infections and then getting the shingles (on my head and face of all places, talk about painful!!!) I asked my new family doctor if I could have FM. He ran alot of blood tests (still no insurance and lots of $$$) wanted to try thyroid meds cuz that test was borderline, then something else cuz it was borderline. After 4 months of experimenting with prescriptions he told me "You have Fibromyalgia" but he never even tried to examine my tender points. He gave me a script for Lyrica, which just made me feel drugged and weird, still had the pain and still didn't sleep well. It was expensive so I didn't try a second time.
Needless to say, I can't afford to keep buying drugs that don't work and paying for visits to see a doctor that I'm not sure believes I have FM either. Now all I want is to find out how to get decent sleep, and what do you do for DEEP muscle pain. My biggest enemy is the muscle under my shoulder blade. It is hard to massage and when it gets angry, it hurts to breathe, my arms go numb all the time and my neck is constantly stiff. I deal with this too often and want to know if anyone else has this problem and what do you do.
My husband and I still have no insurance and he had a bad accident a year ago that has left us with alot of bills. I don't want to add to them, but the vitamins and supplements I have been taking have lost their power to help. I was taking 800 mg. magnisium malate, 500mg. glucosamine sulfate, 1 gram MSM, CoQ10 and ashwagandha. I took melatonin 6mg to sleep, or a benadryl. Now for some reason even that dosen't work. I sleep for brief snatchesand wake every few hours. I long to sleep a whole night thru. I am just looking for advice and clues on what others in my situation are doing. Surely I am not the only uninsured FM person out there. Any ideas that have worked for you are welcome. I will compile a list, research everything and decide what I think will benefit me most. Thanks for listening (reading)
Reply
 
avatar
forgetful88 responded:
Has your thyroid been checked recently. You mentioned borderline levles.

You would be amazed at what all the thyroid issues will cause. Can you qualify for county medical help in any way?
 
avatar
mymyrt responded:
Dear voycondios, bless your heart. I could echo your pain and your frustration with doctors. I understand the shoulder pain, that was my first trigger point in l990. It's still the worst singular pain, never ever stops hurting, and on days like today, when even my nailbeds and eyebrows hurt, it lurks like an embedded nail. The only thing that will lessen it is for my DH to use his thumb and dig into that area until I am almost screaming in pain, and since that hurts worse, it actually makes the shoulder pain feel better! Crazy, right? I cannot imagine how disheartening it is regarding your financial situation. Are you still working? I live in terror, as many others here do, that my SSD will be taken away. My husband was unemployed for almost all of 2009, after he almost died in March. It was a very scary time, and now he works 60-70 hours a week. His health is not great, and since he is my home, I don't know what I would do without him. Since I don't know how you have been seeking help, maybe someone else here can guide you. You have come to a wonderful place for support, advice, and experience. Please post when you can. My thoughts and prayers will be with you.

Joan
 
avatar
fibroinsd responded:
Hello and welcome...

I am sorry you have been through so much...I surely do understand..and we have tons of people here with similar stories..of doctors that haven't believed them or treated them...It is a real shame...

First off...I do need to let you know to read the section to the side called tips..and look for the toolbox post..it has some ideas of things that have helped people...and may help you...

Many people have had that loopy/ dizzy feeling with lyrica. I did take Cymbalta for about a year and a half, and I do think that helped, but it doesn't work for everyone..it is a trial and error process to find the right med...and without insurance, that can be a problem...Cymbalta, and many other companies do have a system to give medications to people without insurance, but I think you need a doctor's prescription to do that..so, like someone else mentioned...I would look into county health...and see if you can talk to a doctor..There are other medications also..but again, without insurance...not sure what to tell you. I think the meds list is on the toolbox post...and if a doctor could prescribe something...I know places such as Target and Wallmart...have some $5 generics they sell...

Vitamins and supplements are really good...the magnesium and malate is great...but also good are a good multi, a good B-complete...(I take a B-100 Complete)...Omegas..and I think most important...Vit. D...and if you can get your level of Vit D. checked that would be good too... I don't know what the ashwagandha is...so not sure about that.

I hope this is helpful...ask questions anytime...we are glad to answer whatever we can..

cece
Let's put the fun back in dysfunctional !- Mary Englebright
 
avatar
dollbug responded:
Hello and welcome.....MiMi in NC....sorry that you are not feeling better....and sorry that you have been through a lot....yes...there are still doctors who do not believe that FM is real....but I can tell you that the wrath of the dragon, aka FM...is a very ugly and mean illness....and it can present a challenge each and every day....but there are good "tools and tips" and I am sure that something will help you cope better...

I have to ask...have you asked your doctor to check your Vitamin D level....which is so very important for a lot of people these days....low Vitamin D can cause some of us to have additional pain...and it can also affect other illnesses as well...it takes just a simple blood test....BUT you MUST ASK the doctor to check it....as it is NOT included (yet) in the normal bloodwork that they do....

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....I am NOT painfree...nor do I expect to be...but I am so much better now than when I first got sick...but it takes time to find the right combination of things which might help you....and this does take effort on your part...

I take magnesium and malate combination supplement, Omegas, Vitamin D, Calcium and Super B Complex...plus others...as I also have other health issues...but these are the ones which help me the most...You should allow at least 6-8 weeks of whatever you decide to try....before making a decision as to whether or not what you are trying is indeed helping you...

I also use the heating pad when needed....I take hot shower at night using lavender bath salts to help my body relax....so hopefully I will get the needed sleep....that we all need....sleep is when our bodies try to repair themselves...
I also use Stopain Spray as needed....

I hope that you will find something soon....

My last request....when you post again....please break up your post....so that it is in shorter paragraphs....some of us have vision problems and long posts are really hard for me to read....

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..
 
avatar
KnowHisHeart responded:
wow that is rough, be sure you are taking Vit D 3000iu day, probably have deficiency like me. I have the shoulder pain from 2 injuries. If you can get to a rhuematologist they usually believe in fibro. Use any community resource you can find to help. Most hospital community programs or clinics for the uninsured. Heat helps me most. I have memoray foam bed and pillow with fleece sheets, this helps me sleep, I do take klonipin to sleep. All communities have free mental health clinics, swallow your pride and get all the help you can. Fibro won't get you disibility, but mental issues will, just do what u have 2! God Bless.
 
avatar
KnowHisHeart replied to fibroinsd's response:
Target was very helpful when I didn't have insurance! They give discounts to uninsured. Offer good advice on supplements.

I forgot to mention I also take fish oil and "Osteo Bicomplex with 5 Lonoxin" both really help, can usually get them on sale buy 1 get 1 free.

I too put the fun in dysfunctional, my home life is much improved, after 2 divorces, but working is a challenge!

Getting out in the sun is important.
 
avatar
An_199962 replied to KnowHisHeart's response:
For sleep you can try upping your melatonin or you can try to take some melatonin and benedryl together.

For sleep I take 12 mgs of melatonin and 50 mgs of benedryl. I also will take valerian root and GABA. But of course, look into the dosing for yourself as I am not a medical professional.
 
avatar
voycondios replied to KnowHisHeart's response:
Thanks for your advice, I did get my vitamin D level checked last year, it was really low so now I take 4,000iu each day, but I haven't noticed an improvement.

I already tried to get help from our county with medical bills a year and 1/2 ago when my husband fell from 18 feet while working on our house. He had 2 broken legs and a broken arm, was in the trauma ward for 6 days and had to have surgery. The county wouldn't help with that because we don't have children, so I know they won't help w/ my stuff.

We are fortunate that the hospital he was tken to has a great charity program, all we were left with was xrays, medications and ambulance bills. It will still take another year to pay that off, but better that the $50,000 bill from the hospital!

I tried to use the clinic at the same hospital last year to get help (I herniated a disc shoveling snow and movind my husband around) The doctor was so condescending and unsympathetic that I came home from my last vist and cried for a whole day. You all don't know me, but I am NOT a crier.

I came here after searching for help hotlines for depression and suicide and will be going to a local clinic in a few dyas. The thing is, if I do have depression, it is because of the pain and lack of sleep. That's what really makes me mad.

MiMi in NC, I hope my paragraphs are earier to read and THANK you for your comforting words. After all these years I have learned how to control my symtoms using many of the things you suggested. But when I have alot of stress and/or the weather is cold and wet (like now in OHIO) I feel like I am in a losing battle because nothing I do helps.

That is the only time I feel like I need something stronger than vitamins. I am hoping the mental health clinic can recomend someone who looks at the WHOLE picture. Not just a particular pain or the insomnia.
 
avatar
dollbug replied to voycondios's response:
Thank you so much....and yes....this is so much easier to read.....I hope that you will be able to get the help that you need from the mental health clinic.....you are correct....someone needs to see the WHOLE picture...and just not a part of it....I have always said that if we do not fit into the square....then the doctors do not "get it"....(sorry Dr. P and Dr. Margaret-but this is so true)

I know that when I first got sick....my doctor was treating me for depression....he tried different kinds of medicines and I continued to worsen....as I now know that it was NOT just the depression that was causing my pain and problems....I also happen to know that doctors must get to the root of the problems....before we will improve....

You are correct....I do not think that anyone knows for sure....which come first....pain and lack of sleep or the depression....as I know that all of mine worked together...or actually didn't work....I guess one might say....for whatever it is a vicious cycle....and we have to get enough sleep so that our bodies can repair and so that the pain will also get better...we must improve them all before things will then improve for our overall care....body, mind and spirit....

I hope that you will find a doctor who truly understands your pain and wants to help you.....as I am sure that there is something out there that will help you cope better....you just have to find it....

Take care and good luck...

I hope that you will continue to post....please know that we all understand how you feel....and there is always someone here to give you understanding and support....


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..
 
avatar
jamesii responded:
I was on benadryl for sleeping until it quit working. Then switched to chlorphenamine, also called chlotab. It is OTC and very inexpensive. It works a lot better.

Ark Jim
 
avatar
booch007 responded:
I haven't read all the notes above me. I say:

First spend 19.99 on the FM and chronic myofascial pain "survival manual" by Dr Devin Starlanyl....(amazon.com) it will show you how to help the paraspinal muscles that are a tough crowd to fight. (those and my scalenes..neck ones..are my nemesis)

Get a memory foam mattress topper on your bed for the gentle support to help sleep. Kohls has coupons and that is how to get started *with a sale. My first was 3" and now I have 6" from Overstock.com. It helps so much to get rest. I turned and turned during the night to get off* those points. So sleep was always broken.

Having no insurance, I am ashamed the doc put you on Lyrica I hope it was samples he tried.....gabapentin is so much cheaper.

I use a door jamb to rub those spots you speak of, also my husband massages me with SOMBRA, this is my capsacian cream (internet buy, the quart size) and he has gotten very good to work them...hurt like the dicken but better after. There is also a theracane (S hook looking thing) to do-it-yourself massage)

Don't forget if massaging, drink plenty of water after to wash away the muscle debris liberated. These congested zones have junk in them and need to be broken up. Motrin also is a benefit for some....I use 600mg most of the time. If the massage was big.

Sharon is pretty good with the drug companies who offer help for those in need. Hope she sees this.

I wish you luck, but I hope you can get your hands on this book, it a main staple in my library and easy to read and understand. All my best for you, Nancy B
 
avatar
voycondios replied to booch007's response:
Thanks for the kind advice Nancy. I got a memory-foam topper about 5 years ago (1st one was 6", too hot) Now I have a 4" from overstock and love it. If I tried to give all the details of what I've tried and done over the last 16 years I could write a book!

Thanks for the info on the "survival manuel". I will be looking it up tonite while I order my vitamins. To any of you who buy alot of vitamins, try Vitacost.com. They have lots of brands, most of my favorites and their prices are really good. I looked at walgreens today as I am low on melatonin. Theirs-Natrol 5 mg time release $11, Vitacost same thing $4.27. Time to place an order!

Hot water bottle works best for my shoulder blade issue, then when it starts giving me a tension migriane, I put a soft ice pack on my head/face. I feel like my body has staged a coup some days. Being immobile is my worst enemy, esp. when it's cold and damp. I get so stiff in just a short time that I move like an old woman. (I'm just 46)

Thanks for the input from everyone and the understanding. Even through it saddens me that others feel like I do (wouldn't wish it on anyone) it helps to know I'm not alone or crazy. Thanks again


Helpful Tips

Living Well with Fibromyalgia
Greetings! I have learned patience and a positive attitude is key to my pain management. I developed Fibromyalgia after a hysterectomy in ... More
Was this Helpful?
193 of 210 found this helpful

Related News

There was an error with this newsfeed

Related Drug Reviews

  • Drug Name User Reviews

Report Problems With Your Medications to the FDA

FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.