I am 31 years old and have suffered with IBS and Barrett's Esophagus since I was 10. I was diagnosed with Fibromyalgia about 5 years ago. Ever since I was a kid I have been trested like I was crazy. I had horrible pain in my stomach and the doctors would tell my parents I was making it up. Finally a doctor did a endoscopy and found the barrett's I was supposed to have a endoscopy every year to keep an eye on it. My last endoscopy was about a year and a half ago at that time I was told I need to be in every 6 month's because it has gotten bad. I was also diagnosed with chrones. I can't take some meds because of my stomach and some I can't take because of the cost. As of right now I take adderall because of my sever ADHD. Which has affected my life very negatively. (The adhd nit the adderall) I don't take the adderall all the time. But I sm on hydrocodone and I take oxy extended 20mg 3x a day and a gabapentin at night. I am alsi really bad at not taking these as well. I skip my meds sometimes. When I do I usually end up regretting it. I have tried savella which seemed to work for the first few months then nothing. I've done cymbalta ive done morphine ive had butrans patch. Ive refused fetinal and several other drugs because the side affects scare me. Ive also had nucynta which I have to say was a maricle for me the big problem was the cost I could not afford it. I worked (lost my job last week) 55-65 hours a week. I also have a huge issue with not sleeping. I exercise I do think that helps. I take magnesium I think that helps. My problem is I don't want to take these narcotics. I have gone to a energy healer that I think helped a little but it's also expensive . I love to swim and I am lucky where I am in Florida I can swim year round. Has anyone found anything that is natural that works? My son has lupus and my sister as well. My son was diagnosed when he was 2 or 3. I have been tested and have had 2 positive tests and 2 negative. Sometimes I start to think I am crazy and the pain is in my head so I stop my meds and the pain is so bad I lay there and cry. The muscle spasms are awful. Sometimes it feels like my skin is on fire. If I didn't have my husband I would have given up by now. He keeps my calm and grounded. There has been a few times when I have been at the point where I have thought this isn't living I can't function. I have missed work quite a bit because of this pain. So I ask fir advice. And I have lost 100 lbs in less than 6 months because of the severe stomach pain it has been about a year since I lost the weight. About 6 months ago I went in the adderall. I had not been on the adderall since I was a teenager. I appreciate any advice. And I know all you fibro warriors know that feeling of being looked at like your crazy and your making it up.
What to do?
Question posted by TabbyFLORIDA on 25 Aug 2013
Last updated on 30 August 2013
The information on this page reflects personal experiences shared by our community members. It is not reviewed for medical accuracy and should not replace professional medical advice.
4 Answers
I'm sorry I can't speak to the stomach issues, but for my migraines & severe muscle cramping in my upper back, neck, shouldars I get about 44 Botox injections which helps me tremendously! The Botox paralyzes the muscle. I get these every 3 months & MediCare pays for them. Hope this helps! All the best!
Hello Darling Di
I have Fibromyalgia and Chronic myofascial pain. I suffer with real bad motor dysfunction and I loads of active trigger points all over. From your knowledge would Botox help?
Sorry to not get back before now, got sick. I have FM not CMF so I can only speak to the FM- yes these Botox injections help me a lot! I'd say they help reduce my muscle cramping about 30-40%. I originally started on Botox because of "migraines". I say that in quotes because both my neurologists over the years & I agree that my severe neck problems/pain give me migraines & also severe upper back esp shoulder muscle spasms/pain. So I also was diagnosed with cervical dystonia b/c my muscles keep my head turned to the left not center. So when MediCare began covering Botox for people with migraines my MD started doing them(also i grind my teeth & always am tense, clenching my jaw) them which is about 20 injections in specific spots on your forehead, scalp mainly, back of neck.
I had originally gone to my friend's Botox party when she worked with a plastic surgeon & paid out of pocket about $200 for i think 4-6 injections between my eyebrows & it helped my pain in that area almost 80%!!! B/c of my shouldar/upper back pain, i get an additional 20 plus injections- across the tops of my shoulders, a few in my mid upper back & scapulas, more in both my neck- front & back. I used to get trigger point injections which hurt me soooooo bad & really did not help me much at all. The Botox injections don't hurt me too bad at all- maybe a 20th of what the trigger point injections were like & that's only in a few spots. I'm sore, may get a slight headache for about 24 hours max. So after i get them, i go home & use ice & rest in bed. There are bad side effects that can occur however I've never had any of them except one time after receiving them in the front muscles of my neck, my neck not too unsurprisingly became a little week- the only way i even noticed this was trying to bring my head back up after leaning ot back to rinse my hair in the shower so i had to use a hand to help lift it. But again this was very minor & only lasted a couple of weeks. A fabulous extra for me is that the ugly, deep wrinkle i would get when i frowned between my eyebrows is gone. I suggest you look at the Botox website- think it's just Botox.com if i remember correctly for more info & talk with your MD. I believe neurologists are the only md's doing this. I hope this long novel helps & if you have more specific questions I'm happy to answer them. Good luck!!
Hi Tabby,
I agree that you should try those medications even though you are fearful of the side effects. All medications have side effects that are undesirable. But not everyone (probably not most people) are affected by the side effects. You should at least give them a try and see how they affect you.
Now that you are not working, you may very well be eligible for assistance from drug companies' programs for people who don't have the money to pay for their prescriptions. I know that Purdue has a program for OxyContin if you have a prescription and cannot afford to pay for it. I know this because I was on the program for a while.
Here is a link to a website where you can list all the drugs that you take, and they will give you a list of programs where you may be eligible for assistance on your prescriptions:www.pparx.org/en/prescription_assistance_programs
It sounds like you are still reacting to your experience as a child being told that it was all in your head. How distressing that would have been. You KNOW now that is not the case, due to your Barrett Syndrome. For someone who was working 55-65 hours a week, you must have been under a lot of stress. And that amount of work would be impossible for most of us with fibro, as well as a lot of the rest of the population. Give yourself a break on your judgment of yourself.
Also you know that when you don't take your meds, the pain gets bad--another reality reminder that you do have medical problems. You need to listen to your diagnoses and pay attention to what you need. To be so afraid of potential side effects without even trying the med is not prudent when you are having so much pain. And talk to your doctor about other meds that you could try. E.g., my fibro has been significantly treated by Trazodone.
You don't mention taking Protonix or Prilosec which are needed to treat acid reflux. Could that help your eating problems? Have you tried Zofran or even Tums for your upset stomach? You don't mention those meds either.
Even though you don't think that exercise has helped your fibro, it is the single best remedy for it, even better than meds--but in moderation. Plus you need to start off slowly. Not sure if swimming is considered good exercise for fibro, since there is no bone contact. You might try walking. Have a good talk with yourself about what is really reality now--not what you were told when you were a child. You are dealing with a lot. You take care.
I have Taken prilosec for a long time. I do think exercise helps fibro and I do exercise I do yoga but swimming is what I like the most. I was on tramadall for a while I didn't have much of any relief. I have taken trazadone as well. I know I need to take my meds I just really prefer not to. Since not working I have felt so much better. I was wondering about any natural supplements that have worked good for anyone.
I appreciate the comments. I have never actually talked about what I am going through before, it's kinda nice getting it out and being assured I'm not crazy.
Thanks!
You're definitely not crazy. I'm so glad that you now have a forum to explore your feelings and medical stuff. Drugs.com is an excellent website. I'm wondering why you don't want to take your medications? What are the side effects that you don't like--that you would rather suffer from the pain instead of taking them? You have some significant medical issues.
Hello TabbyFLORIDA
I am sorry to hear that you have lost your job and I am sorry that you are suffering in so many ways.
The pain that you are experiencing is not in your head. You have got four diagnosed conditions which all cause pain. But you do need to be compliant with your prescribed medication. If your condition(s) prevents you from taking a medication that has been prescribed for you then you need to see the doctor and inform them of this. There are alternatives to most medications. I know that the cost is one factor which prevents you from being able to take what you have been prescribed. I do not live in the USA so I don’t know what help there is for this. I am sure one of our fellow drug.com members can provide advice on this matter. With regards to narcotics (opioids) if they help with the severe pain that you are in then you should take them.
What do you or should you take for your Fibromyalgia (FM)? You may find that your IBS becomes worse as FM can cause this condition. Further FM makes you more sensitive to pain in addition to experiencing pain from things that should not cause pain. Hence why you should take your painkillers. Also FM can and does affect your ability to sleep. Again this is treated with medication. The burning sensation you feel on your skin is due to FM. I and many other people have this symptom also. It is usually treated with medication (which does not sooth the problem totally). You can try applying a muscle cooling gel to the affected areas and a fan to help with this. It will not totally get rid of the burning but it should provide some relief.
I am unsure as to which diagnosed condition that you have that you require our help and advice. Remember that you have and are going through a lot of things at the moment. This can lead to stress and make all your conditions worse. This is all the more reason to take your prescribed drugs. Hopefully a fellow member can inform you about financial assistance to pay for your medications and offer you additional advice.
Hang in there and take care.
Related topics
peripheral neuropathy, irritable bowel syndrome, fibromyalgia, barrett's esophagus
Similar questions
Search for questions
Still looking for answers? Try searching for what you seek or ask your own question.