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Fibro-sufferer
@fibrosufferer

Posts: 25
Joined: Nov 22, 2011

Fibromyalgia Scoliosis Arthritis

Posted by @fibrosufferer, Nov 22, 2011

I am 29 years old and was diagnosed with Scoliosis in 2004 and in June of 2011 was diagnosed with Fibromyalgia along with arthritis in my hands, back and feet.
I am a homemaker (because I can not hold a job due to the pain) with 3 children, 10 years, 8 years and a 13 month old that just started walking and getting into things πŸ™‚ I can not “call in” sick to this job!! So I need to find something to help me!!!
I have seen 4 rheumatologists, a hematologist (due to abnormal platelet level not linked to hemaphelia) a pain management clinic where I recieved 2 injections ( that DID NOT help) and have taken Cymbalta, Lyrica, and Savella all suppose to help fibro and they did NOTHING for me!! πŸ™
I have found that Vicodin is the only thing I can take that helps me! I can’t find a doc who will use this as treatment πŸ™
I have tried exercise ( I just hurt more later)
I have tried physical therapy ( didnt work)
I have a tens unit that I can only use while sitting still due to the fact it “shocks” me when I tighten my muscles to move.
I’m really depressed and don’t know what to do!
Please…any info that anyone is willing to share is much appreciated!! Thank you

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Fibro-sufferer
@fibrosufferer

Posts: 25
Joined: Nov 22, 2011
Posted by @fibrosufferer, Nov 22, 2011

Oh and I forgot to add how completely irritating it is to be told ” you don’t look sick!”
I want to respond with ” well you don’t look stupid!” but out of respect, I don’t


TexasBarb
@texasbarb

Posts: 3
Joined: Nov 23, 2011
Posted by @texasbarb, Nov 23, 2011

this is my first time on this web…..I, too have hurt for years! About 30 years. And no doctor has ever helped me, except one. She would give me cortisone shots and prednisone to take, with pain meds. Now, I don’t have her anymore and my new doctor refused to give me any pain meds. So, finally I went into Houston to the Medical Center (3 days ago) and was finally diagnosed with Fibromyalgia. He gave me Ultram 100mg to help with the pain. I have taken it ….and the pain is still with me, although I feel like … maybe…. I feel a little bit better. If I don’t get better in a week, I am going to ask him to up the dosage to 150mg or 200mg of the Ultram.
He also advised me to “Exercise” like in a gym…..to never give up. I have to keep on trying to exercise, because I am losing my muscle tones and really looking bad.
Do you exercise any on a regular basis? You are so much younger than me…..but I understand your pain. Maybe a chiropractor can help, too. There is One Thing that I use that really helps pain. I get it off the internet. It is called FUSE. It is an ointment you rub on the hurting areas. I can promise you…..it really helps!! Hope it will help you, too!!


Fibro-sufferer
@fibrosufferer

Posts: 25
Joined: Nov 22, 2011
Posted by @fibrosufferer, Nov 26, 2011

Thank you!!
I have tried ultram as well..no results…I’m willing to try almost anything to stop the pain! I will definately try it and get back with you πŸ™‚


tired of pain
@tiredofpain

Posts: 7
Joined: Oct 09, 2011
Posted by @tiredofpain, Nov 26, 2011

How long have you had fibromyalgia? How severe is your case? If I ask a question please feel free to tell me you don’t want to answer the question. I first went to Mayo Dec. 29,2010 and met with Dr. Wang the rheumatologist and had blood work done. I had seen a rheumatologist in South Carolina where I live and saw him for a year and a half he did not do the normal blood work that should be done when someone is complaining of joint pain. I went back to Mayo(Jacksonville) in February on the 9 and 10. I saw Dr. Wang on the 10th which happened to be my 40th birthday when he gave me my results which are: Fibromyalgia/ Central Sensitization Syndrome, Baker’s Cyst(already knew about this), Depression, low iron, low calcium, osteoarthritis, chronic fatigue syndrome with chronic diffuse myofascial pain which signs started showing about 4 1/2 yrs ago and would ask every doctor I ever saw even my ob-gyn if they could think of why I was having this pain, just in my elbows and knees. Finally after wasting all that money seeing a rheumatologist and him telling me there was nothing else he could do for me I went to my family physician and told him if he did not send me somewhere that could tell me why I was having so much pain then the next time he saw me I would have nothing below my elbows and nothing below my knees and he said the only thing I know to do is to send you to the Mayo clinic in Jacksonville. By this time I am already on a Duragesic (Fentanyl) 50 mcg patch. I wish I would have gone years earlier because Dr. Wang said my pain would not be as bad as it is and I would still be able to work. I am a certified pharmacy technician, but I had gotten my Emergency Medical Technician license as a Basic, and right after I got my wonderful birthday diagnosis I had just finished taking an EMT-I 85 class which is a step up from a basic. I still have one test to take but since my diagnosis I have not been able to focus enough. I have taken it one time and I get two more chances but I have to get a handle on everything else that is going on in my life right now before I go test again because I don’t want to fail again I don’t think I could handle the disappointment.. That is basically my story would love to hear yours as long as you feel comfortable talking about it. Dr. Wang suggested that I see a counselor which I am but I think talking to someone that is possibly dealing with the same thing I am will be a bonus. Can’t wait to hear back from you.
Danielle Mixon


Fibro-sufferer
@fibrosufferer

Posts: 25
Joined: Nov 22, 2011
Posted by @fibrosufferer, Nov 26, 2011

I was diagnosed with fibro June 29, 2011
I have had chronic pain for 14plus years…I’m losing grip in my hands.
I have not been diagnosed with ra but I think that’s what Im dealing with.
I have seen soo many doctors that I can hardly keep them all straight.
I was scheduled for a MRI but had to cancel appointment due to the fact my insurance will not cover all of it…it will cost me 650$ out of pocket…which due to all the co pays I had with all my appointments… I cannot afford to do this at this time.
I have pretty much given up on finding treatment…it seems all the doctors I’ve seen have not helped me..they have been very discouraging and make me feel like I’m crazy! One pain clinic told me to see a shrink and that there wasn’t anything g physically wrong with me…haha..they didn’t run any tests just a physical by touch…Wth?!?! It’s soooo frustrating as this has really made my life very difficult!!!
Would love to keep in touch
Feel free to email me directly mrs_tiffany_roberts@yahoo.com
Hope to hear from you soon πŸ™‚


sandrabhn586
@sandrabhn586

Posts: 1
Joined: Nov 27, 2011
Posted by @sandrabhn586, Nov 27, 2011

Hello, I’am presently in horrible pain, I cannot grip and hands got red and swollen
doctor thought it was an infection it came on one hand and then swelling would go down and go to the other hand. The doctor put me on antibiodicts and it goes away
then comes back. He took blood work for gout and test came back no gout. I now have horrible pain in my muscles and its hard for me to walk or try to pull myself out of bed or do anything that involves my muscles. I have always been a healthy person up until now. I don’t know why this is happening to me. It even went into my
jaw. I was thinking it was my teeth and have an appointment with my dentist on
monday. My memory is not like it used to be and I’am getting so tired of this. I wake up in the middle of the night with pain. It has affected my whole life. Does any of this sound like what you have been experiencing? I’am also going to have blood work done on Monday to check for RA.


Fibro-sufferer
@fibrosufferer

Posts: 25
Joined: Nov 22, 2011
Posted by @fibrosufferer, Nov 27, 2011

It sounds alot like what I’m going through…most of my pain is in my back though.
I was told be a dr that 30% of people with ra end up being diagnosed clinically not through bloodwork bc I guess it’s not always apparent πŸ™


tired of pain
@tiredofpain

Posts: 7
Joined: Oct 09, 2011
Posted by @tiredofpain, Nov 27, 2011

are you currently seeing a doctor at Mayo? Right now I am trying to get on disability to try to help financially. To tell you the truth when I was diagnosed I told my husband just to go ahead and put me in the ground.


Workhorse1
@workhorse1

Posts: 4
Joined: Nov 28, 2011
Posted by @workhorse1, Nov 28, 2011

Hi, Tiffany,

Please what ever you do, DO NOT GIVE UP! Please read my post through to the end and if you want, please contact me directly but there is hope! There has to be. The one thing I am sure of is having support is very important. You have support through the community and now through me. :)

I am new to this community and am in the same boat as many of the stories I am reading. Pain started 2 years ago, after lifting a 40 lb bag of wood pellets. Like you and many others I spent thousands over the last 2 years on co-pays, Insurance deductibles payments, internet purchases promising pain relief (none worked), and every med the doctor said would work but to no avail (my closet is a mini pharmacy of unusable meds).

After doing a great deal of research, I finally went to a neurologist who sent me for a spinal tap and in-depth blood work. The blood work ruled out: MS and Lymes Disease, which left Fibromyalgia. I am going back to the neurologist tomorrow so I started doing more research on fibro and found the Mayo Clinic, who has a great deal of info (http://www.mayoclinic.com/health/fibromyalgia/DS00079/DSECTION=lifestyle-and-home-remedies), which has helped a bit – not with the pain but with understanding what is happening to me and reminding me that the mind is definitely a valuable tool for us! The 1 thing I have learned over the last 2 years is the mind cannot focus on 2 things at the same time. For example: pain and happiness. The link above provides some valuable info on reducing the level of pain and the sadness the pain causes: reduce stress, get enough sleep, exercise regularly, pace yourself, and maintain a healthy lifestyle. You have the link so you can read the details but basically the info is: give yourself a break! Don’t stress about finding a cure as none exists. Instead find ways to deal with the condition and do not let depression sink in too deeply or the pain wins! Don’t let the pain win! If you start to get down in the dumps, find something to make you smile! (Today, for the first time in probably 24-30 years, I watched the Smurfs! It made me laugh, which reduced the pain for a little while.) Find something positive and concentrate on it. I found the following quote the other day and it is VERY true: “Nobody can hurt me without my permission” Gandi

Unfortunately, the conditions we have do not have cures but we have to find a way to stop thinking about how horrible we feel and think about how lucky we are the condition is not worse! Please don’t get me wrong, I am in pain all day and night, take 9 pills in the AM and again at night with 7 pills every 4 hours and the pain is still there, which is why the research to find other ways to assist in relieving the pain because the meds do not work. I only sleep 1-2 hours at a shot and my life is mainly spent in my living room because it hurts to drive or ride in a vehicle. However, when I started thinking about suicide, I realized I cannot alow the pain to reduce me to tears and suicide! Life is too precious and I cannot allow the pain to win!

My life’s passions are my men (hubby, Vin, and son, Vinny), gardening and flowers, and helping others. NE Pennsylvania is not conducive for gardening at the end of November so I bought myself a beautiful purple Cyclamen the other day as a reminder that eventhough I am in pain, life still has a great deal of beautiful things to offer! Over the last couple of days, I spent a large amount of time with my loved ones to remind myself that happiness and support surround me. I have started reminding myself to think positively instead of negatively. For instance, instead of: “OMG, I hurt so bad right now!” I have started to say, “OK, I hurt, but it could be worse!” After reading the info on the Mayo Clinic site, I started some very simple breathing exercises, which increases the level of oxygen in the blood which gets the blood moving and does reduces the the pain! Tomorrow, I am going to search for my Yoga for beginners DVD as studies have shown that yoga is good for increasing blood flow, reducing pain, and strengthening the core muscles.

If we change our ways of thinking to see what we can do to help ourselves: not try to lift the 40 lb bag of pellets because of the after pain or retrain our thoughts to be more positive instead of negative, we can reduce at least some of the pain.

If you want to talk, please do not hesitate to reach out – cell also has text: 570807-2463.

I’ll check back as I know that even though today I am in a positive mood, tomorrow may be different!

Just a bit more backround: I will be 40 on February 18th, happily married, have 1 son, work full time, and go to school full time (University of Phoenix Online) with a 3.87 GPA.


Workhorse1
@workhorse1

Posts: 4
Joined: Nov 28, 2011
Posted by @workhorse1, Nov 28, 2011

I tried telling my husband to just shoot me and put me out of my misery. He just flatly refused. I wonder why? πŸ™‚

What is the difference between the docs at Mayo and other docs (pain management, rheumatologists, neurologists, etc)?

My knuckles feel like someone is putting hot pokers into the center of the knuckles.

One thing I did notice: body parts I had previously hurt very badly seem to hurt more: hurt my back at 13 years old – main location of pain, left knee – smashed on a rock driveway, knuckles – from punching, wrists – from typing.

Has anyone noticed the same: previously hurt locations seem to hurt more?


Workhorse1
@workhorse1

Posts: 4
Joined: Nov 28, 2011
Posted by @workhorse1, Nov 28, 2011

I went through PT and unfortunately, cannot do the exercises because they hurt too much (even the stretching exercises hurt!) I have heard that yoga does help and improves the core muscles, have you tried yoga and if yes, how was it?

I have not had Ultram but what about Cymbalta? I have been taking it for years and recently increased the dosage for the fibro. Without it, the pain is unbearable. From the quick research I just did, others say that Ultram is like baby aspirin. The one warning about Cymbalta: it’s hard to sleep because Cymbalta affects the serotonin levels in your brain so if possible, take it in the morning. My mother just started 10 mg for her diabetic neuropathy and it is helping. Just a suggestion, I am not a pharmaceutical rep, just been on way too many different meds over the last 2 years! :)

Oxycontin – didn’t do anything for me
Percocet – Didn’t do anything for me
Opana Instant release (Oxymorphone)- makes you feel very dopey and just want to sleep, does reduce the pain level. Currently taking on “as needed” basis, probably 5-7 times per week.
Opana ER (Extended Release) – I don’t feel any side effects, currently taking twice a day.
Cymbalta – I LOVE! Just don’t think it is the right med for my level of pain but if you have low seritonin levels, Cymbalta ROCKS! Currently taking twice a day.
Deplin – Helps Cymbalta cross the walls in the brain. Similar to folic acid when pregnant. Currently taking twice per day.

Please let me know your thoughts about the yoga.

Thanks!
Jen


Workhorse1
@workhorse1

Posts: 4
Joined: Nov 28, 2011
Posted by @workhorse1, Nov 28, 2011

Hi, Barb,

I looked for FUSE Ointment but could not find it. Could you please provide where you found it on the internet? Would truly appreciate it!

Thanks,
Jen


Fibro-sufferer
@fibrosufferer

Posts: 25
Joined: Nov 22, 2011
Posted by @fibrosufferer, Nov 29, 2011

I just found this! I must have overlooked it. Sorry! πŸ™‚ I saved your number..thank you so much for reaching out to me! I’d love to text you someday soon πŸ™‚ when is the best time for you??


Fibro-sufferer
@fibrosufferer

Posts: 25
Joined: Nov 22, 2011
Posted by @fibrosufferer, Nov 29, 2011

No I’m not seeing ANY doc right now…I’m mad and frustrated with doctors that I’ve seen so far…so I’m taking a break!! πŸ™


Fibro-sufferer
@fibrosufferer

Posts: 25
Joined: Nov 22, 2011
Posted by @fibrosufferer, Nov 29, 2011

I told my husband the same! πŸ™
I have noticed VERY MUCH that old injuries (which I have a lot of!) hurt more now…well a change over the years. But I’ve been in THE MOST pain since I had my last child and during pregnancy even πŸ™ she is 13 months old

UPDATE-
After having a nervous breakdown at the beginning of December and being hospitalized for a week. I am now getting the medical care and treatment that I have been looking for!!!
I am driving 2 hours one way to get it, but I finally found the doc that is AWESOME and willing to listen and she is very thorough and I am very confident that I am in the right hands FINALLY!! My pain in now being managed by taking Nurotin…600mg a day…Tramadol…and a few other non narcotic meds…im glad that I’m not having to take Vicodin to live through the day..although I know If I had the Vicodin I wouldn’t feel much pain at all, but at least I can tollerate the pain most of the time now. I also am very aware that my emotions are linked to my pain…when I get upset my pain increases IMMENSELY so I try deep breathing and to stay calm..I know it will take so time to make this a reaction so I don’t even have to think about it…but it will be well worth it!!
Thank you all for sharing your story and giving your advice!! It’s so “nice” to know I’m not alone in this πŸ™‚
My heart, thoughts and prayers go out to you all!!! <3

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