I was diagnosed with diabetes about a year and a half ago, and it changed my life. I was almost 300lbs and scared that I was going to end up like everyone in my family. I did not want to end up like them. I lost 95lbs in a year which I was very proud of. I started having this pain in my hands in feet about 9 months ago so the doctor put me on Gabapentin. I started out on a low dose but everything escalated very quickly, and I ended up taking 2400mg of gabapentin and it was not helping at all. The pain was getting worse going up my arms and legs making it harder and harder to work. The doctors have done so many different tests from: nerve conduction tests, MRI, CT, X-rays. They found that I have neuropathy in my hands and feet, spinal stenosis in my back, herniated disc and spinal stenosis in my neck, and fibromyalgia. This past year has been filled with test after test, waiting for results and the pain is just getting worse. I can no longer work because I can not stand for more than 20mins without crying so much because of the pain. So many different medications. It is so overwhelming because I am only 34 years old and I’m having to apply for social security.
Sometimes I get so overwhelmed with anxiety that I cannot function at all. There are more days than not that I just sit in my soft recliner and do as little as possible because the pain is so bad. I get tired of having to move the heating pads in different places on my body just to get some relief. The doctor tells me to take Epson Salt baths, that sounds great, but here’s the problem after my body relaxes I can not get myself out of the tub I can’t even get up and make dinner for my kids. My emotions get the best of me more than not. I do try to stay positive, but when your doctor says he does not know what to do to help me with the pain. He finally got me any appointment with a rheumatologist the appointment is in mid April, and waiting to hear if I can get in with a pain specialist.
How do I keep from going crazy? I feel so lonely and depressed. It would be nice to have a day without this excoriating pain. To get on social security I have to have a note from my doctor saying what capability I have of working. Well the doctor is sending me to a physical therapist to have a functional capacity evaluation. It is ridiculous when every time he has seen me for the past couple of months they have to wheel me in using a wheel chair. Its like he does not believe that I’m in so much pain that I can not work, like I’m making it up or something.
I just get really down about it, but I put a good face on when I’m around people. I don’t want the people that I love to know the extent of the pain and how debilitating it is. I’ve gained 20 pounds in the last 2 months because of the Cymbalta that they put me on. Sometimes I just want to stop taking everything so that they will know the seriousness of this problem. I wish that the doctors could just feel the pain for a least an hour to see how this pain is so debilitating.
Dear Hopalopng,
Please know that you are not alone!!! So many of us are struggling with so many of the same things that you are! It is so unfair, especially that there is little to no support or empathy from those who can’t understand the exhaustion and negative perception of self that comes with that greedy and unrelenting companion, chronic and constant pain!
However I must say, congratulations on the weight loss! That is phenomenal! You are to be highly commended! I hope that helped with the diabetes.
The amount of skeletal painful diagnoses you have makes me shiver. Reading them I would imagine you to have to be in a wheelchair all the time! Doctors can be especially frustrating and disappointing at times. I had 5 of them tell me It was all in my head before I was able to get an accurate diagnosis of FM. Now I like my GP but just speaking to him at my last visit about my latest pains, he threw his hands up in the air and pretty much just walked out of the room. I drove home in tears. I am taking 1400mg of gabapentin three times a day and cymbalta twice a day. Just loving having a weight issue for the first time in my life when it hurts to even stand up. I now have clothes in three different sizes depending upon if my meds are making me gain weight or if my IBS is active and I am losing weight. My last IBS episode lasted six months and I lost 31 pounds.
I have binge watched so much tv since the pain reached my feet and hands, too bad the Cogfog makes it difficult to recall watch I watched.
I found out the hard way (like you), to take the hot baths with Epsom salts just before bed as I am a wet noodle right after taking one. I also am careful not to stay in the tub too long so I can get myself out! On another support group they have spoken about hot showers and fainting for people with FM so be careful of that as well.
I too am trying to obtain social security after having lost my job because I was not able to get there enough to fulfill my contract. I am trying to work one day a week but hardly making that as the work is getting too hard to do on demand. The stress makes me physically ill for days or weeks at a time. So in turn the anxiety over finances and what my life is going to be now is a major issue for me too. I am a widow with no children.
I wouldn’t worry too much about the brave face around people. I would suggest that you start educating them and yourself about how they can help so that they can be there for you when you need the support! People really need to know what you are going through so they can be empathetic and understanding as well as supportjve and caring.
As far as helping with the pain, in reading this and other support groups some people have found relief changing their diet to help reduce inflammation, meditation, yoga, and other forms of low impact exercise. I am still searching for something that works for me.
Well that is a long enough rant from me. Please know that you are not alone! Please keep reaching out here and other support sites. I have found them helpful to know there are others just like me out there! You have already proven your strength with your dramatic weight loss. Hang in there and take care of yourself!
Thank you so much for the encouragement. I did work really hard to lose all that weight, but knowing that I’m gaining some of it back is really hard. I can’t imagine being a widow and having no kids either, that must be hard. I know that my emotions are everywhere, but I’m so glad that I have my boys to keep me from doing something I would regret. My boys are my life, they bring me so much joy and laughter. I really don’t know what I would do without them. My oldest is fixing to turn 15 and he is a goof-ball, always wanting to make me laugh and when I am down he sits and holds me while I cry. My youngest doesn’t really know how to deal with me being in pain all the time so he does not say much. He has just turned 13 so he really doesn’t want to be around anyone right now. He is very independent, but every morning he comes and sits beside me and puts his head on my shoulder and asks if I’m doing ok and tells me that he loves me. This makes me smile, I really miss them when they are at their dads.
What do you do to keep the loneliness from taking over? Thank you so much for the advice it really does help.
The loneliness or rather isolation of this disease has been tough. The support groups help but my two little dogs have been my saving grace. They are why I get up most mornings and give me a lot of reasons to smile.
Would you like to chat together sometime? I would like to have a new friend and we could give each other emotional support. I have been really struggling sometimes and I would love to have someone that I could lean on and have someone that I can help out as well. My email is: hopalopng@windstream.net
DEAR HOPALONG,
ive been where been iknow exactly what your going through.i was sick in April 2010.i colapsed at weork was sent to the er lights and sirens.they said within an hour my TSH thyroid level was low and i was discharged.iwent to my primary doctor the next day.he suspected epilepsy and ordered an test caslled an EEG.i had it and it was negative.i didnt feel better so i went back to the primary doctor. he put me on very high doses of VITAMIN D after trying it it didnt help.he said ive done everything i can do for you i cant do anymore and refered me to a bigger hospital.i went to a bigger city to an intrenal medicine clinic and the internist oredered a lot of blood tests and an echocardiogram and a cardiodod doplar.al the tests blood and the other two tests which are for your heart and cardiodod arteries in yoyr neck one on each sidei.he refered me to a rheumatologist.it was late fall 2010 by the time i went to the rheomatologist.he dtermioned that i had fibromyalgia.i was still working.in the spring of 2011 i applied for social security disability without consulting an attornet first you should go to an attorney and have them file the application for you.i was denied reapplied for reconsideration and was denied again.i put an disabilty attorney on retainer.i went to my ALKJ HEARING june 2013 and with the attorneys help i won my disabilty case.i was still working but by this time it was very difficult to work. i had to tske 4 breaks instead of the 3 allowed but my coworkers understood.it got to the point i couldnt work a full dayshift so i had work the shorter night shift.i hope you find pain releif and you will win your disabilty case
I empathize with what you are going through. I was diagnosed with FMS in 2009. I have several herniated discs in my C and L spine as well as arthritis, sciatica, migraines, and severe allergies (eczema on my eyelids that itch so bad at times). In 2017 I was having cold chills and a bunch of rashes came all over my body. I went to my internal medicine who ran a bunch of test and I found out that I had antibodies for West Nile Virus, Toxoplasmosis and Dengue, however they could not find out what caused the rashes. I must have been infected when I was young. My internal medicine sent me to my dermatologist who told me it was Pityriasis rosea. Last week my Rheumatologist told me I tested positive for West Nile, Toxoplasmosis and Lupus (going to do more test to confirm if I have Lupus).
Two weeks ago my back gave out at aqua therapy and I could not walk or talk. I have been having these episodes for 10 years and the doctors cannot find out why I have these episodes.
A few weeks ago I started experiencing pain in the bottom of my feet. There are days like today when I can barely put any pressure on them to walk. My faith in Jesus is what keeps me going. His love comforts me when the pain becomes unbearable. I pray for peace and comfort for you.
It is best to take the epsom salt baths just before you go to bed at nights. I take probiotic for the IBS in the form of dairy free yogurt, probiotic pills or kombucha.
I’ve had fibromyalgia for 30 years, unable to work and home mostly bed bound. I take 300 mg of lyrica and 105 mg of morphine and see a pain/rehab specialist. Adding 100 mg more of lyrica helped lately but I was gaining a lb a week weight. My pain is controlled if I don’t do anything, but the fatigue is like having the flu. I also take an antidepressant, which helps. Meditation helps with the emotions too. I hope everyone out there finds something to help them. It’s a terrible disease to have.
I also keep busy with my kindle to distract from the pain.
Here’s my 2 cents worth: I’ve had fibro for 40 years. Every person is different and every doctor is different. for the first few years, most days I could handle the pain. More recently being in my 70’s, nothing helps. Always to find some distraction, bird watching, TV, talking to a friend, a pet, anything that would distract me from my pain was helpful. This is truly an Invisible Disease. All my tests from blood to MRI’s to psych tests are always normal. Docs cannot find anything wrong with me, yet my body says EVERYTHING is wrong. I am allergic to almost every medication. Morphine was like eating a M&M candy. I have no advice, except to take it one day at a time and to know you are not alone – there are so many lonely desperate people with this disease. Please know that God loves you. Carolyn
Please do not let anyone give you Flouroquinolone antibiotics like Cipro, Levaquin or any thing that has the root of the word “flox” in it. Not even for an ear infection. These antibiotics are linked to DNA damage that comes on gradually in many cases. While I don’t know what exactly is causing your symptoms, there is a possibility that medications can be at the root. Believe me, I know how disheartening this news will be to you as there is not a solution. That said, regarding the magnesium, if you can get the liquid nano form and put in your water, that might be helpful. I also use Mo Maggie Magnesium cream that I got from Amazon and seem to get some minor relief at times. Know that you are not alone!!! Meditation and music with binaural beats is helpful for me – Tara Brach, Thich Nhat Hahn, Jon Kabat Zinn are a few of my favorites. There is a song called Weightless by Marconi Union as well. Hang in there.
Thank you for the advice. I’ve been having troubles getting in and out of the tub especially if I just had a nice long bath with the Epsom salt. When my muscles get that relaxed it is hard for me to get them working again. I have looked into getting a walk-in tub, but that might have to wait till I get some more money coming in.
Thank you so much for the advice. Since I’m new to all these different medications, I will check with my doctor or my pharmacist to make sure that none of them are causing me more pain. I will definitely try that Magnesium oil and cream. Music is my go to for relaxing, thank you for the song suggestions.
Thank you so much for the advice. Having this for 30 years must be daunting. I’ve been on lyrica 150mg twice a day, it helps some. My doctor will not raise any of my meds will I get in with a pain specialist. Does the rehab help any? Being bed bound must be really hard and I understand what you are saying about the fatigue it is horrible. Some days I just dose off and on cause I’m not able to keep myself awake. The doctors put me on Cymbalta for my depression and I have gained 20lbs in 2 months. I hate it and they just don’t want to listen, sometimes I think that the doctors think that I’m faking all this pain. Believe me, I don’t think that there is anyone out there that would want to fake anything like FM.
Hi. Thanks for responding! I couldn’t handle the side effects of cymbalta. Where do you live? I hope it’s large enough to have a choice of doctors. I use health grades on the internet to help me search for doctors. Have you tried tramadol? It has less issues than morphine and has been shown to be effective for fibromyalgia. It’s frustrating isn’t it- that other diseases get fixed, but not ours. I hope you find some joy and activity in your day tomorrow.
No problem we have to be here for each other, so that we can make it. I live in Lubbock, Texas and there is really only 2 hospitals and one doesn’t take my insurance. I’m currently on tramadol 3 times a day it is a low strength because my PCP doesn’t want to raise it because it could cause more harm. I laugh at him so much, I think that most doctors are full of themselves and only hear what they want to hear and not the rest of the symptoms. I wish that life was easier, but it is what I have been handed. God says that he will never give you more than you can handle, so we must be some really strong people.
on the weight loss! That is phenomenal! You are to be highly commended! I hope that helped with the diabetes.