Having a rough time right now
Posted , 9 users are following.
Hi. I was diagnosed with fibro about 2 years ago. My doctor gave me gabapentin which quickly stopped working. He said there wasn't much difference between gabapentin and lyrica except price. When the gabapentin very quickly stopped working he just wanted to increase the dose. That didn't work either. The last 5 years have just been a blur of painful confusion. I can still work but barely. I had to give up higher paying jobs for jobs that are harder on my body but that allow me to cancel shifts 6 hour shift in advance without penalty.
Recently I went to a specialist to see if they had any other options. When all she had to offer was increasing the dose of gabapentin I just broke down sobbing in her office. I tried not to get my hopes up about anyone being able to help but I guess somewhere in there I though she might be able to help.
I'm currently in a very rough flare. My whole body throbs. My feet hurt to touch the ground. I am irritable and my whole family is paying the price for my illness which I think is the hardest part of fibro. I'm in pain and can hardly take care of myself but I'm also expected to take care of others as well. When my daughter does normal kid stuff like not listen the first time I just start yelling. It isn't fair to any of them.
The new specialist has ordered lots of test that my diagnosing doc never ordered. To check for muscular distrophy and other serious disorders. I had an MRI yesterday and she's ordered an EMG for my right leg and arm. Now I'm worried that maybe it's something more serious. Not that fibro isn't serious but just that some of the things she is checking for result in paralysis or death. I'm worried and for the first time ever just hoping the diagnosis comes back the same.
I can hardly get out of bed right now and I have to work tomorrow. I'm not sure how I'm going to make it. But then I feel this way about every day of work, so I try to remind myself that things are bad right now but they will likely calm down in a few weeks and I will be able to do more things like clean and maybe exercise. But I'm severely depressed, I spend most of my time resting just feeling bad about myself for not doing things that need to be done. I constantly find myself trying to convince others that yes I really am in pain and that's why I'm not doing laundry or cleaning. The TV distracts me from being uncomfortable. But I sometimes feel like other people think I'd just rather sit in bed and watch tv than participate in life. If they only knew how much I want my energy back and how much I want to be able to go out with my family without getting uncomfortable and irritable and ruining the whole thing.
I don't know anyone else with fibro, there is no support system in place for me. So I thought maybe introducing myself and reading posts on this forum might help. It also might be good to hear about different treatment options. So Hi. I'm Alexis and I'm struggling pretty hard right now. But I think most everyone with fibro is struggling.
1 like, 18 replies
RichardKen alexis89205
Posted
Hello Alex
I'm so sorry that you are having to cope with this. My partner has had to cope with this for many years and I'm only on here to learn more about it so as to have additional insight into FM.
Best wishes to you for some answers. Richard
alexis89205 RichardKen
Posted
Thank you for your kind wishes. I'm hoping for answers soon too. It's very empathetic of you to be reading blogs trying to understand this condition better for your partner. Not many people do that for loved ones and I think it's really great. I'm sure you are providing a ton of support and making this a tiny bit easier for your partner and that can make all the difference. Good luck to you.
RichardKen alexis89205
Posted
Dear Alex
Thanks for your kind words. FM is horrible and it often comes with other things. In my partner's case a compromised immune system, a bit of ME, diabetes and physical damage on top of cancers thankfully resolved for the present time.
It can be tough but although I have only recently come on the scene I want to do the very best I can to support her as best as I can
All the best, Richard
helen18399 alexis89205
Posted
I have had an unconfirmed diagnosis of fibromyalgia this week and am currently being weaned off steroids, for the previous diagnosis of GCA.
They say that steroids don’t touch Fibro pain, but I have been in pain all week since dropping 10mg, although nothing like the pain you are suffering.
All I know is that everyone reacts differently to the condition and the medication, and I am sure you will find advice and support on this forum.
One thing you could consider is finding a medical herbalist, who can test for vitamin deficiencies and food intolerances- I intend to consult one in the New Year.
I wish you and yours all the best for the future.
alexis89205 helen18399
Posted
Thank you Helen. I know this reply has come a bit late. I was having a very rough time and I'm just pulling out of it. I have considered seeing an herbalist, I know people told me left and right that a chiropractor wouldn't help but chiropractic medicine is one of the things that has helped the MOST. So I may also try more no -traditional means of treatment just to see if I see improvement. I'd hate to think that there was something that could be greatly helping and I didn't even TRY it because I just assumed it wouldn't work. I appreciate your suggestions and I hope you are doing well yourself.
RichardKen alexis89205
Posted
Dear Alexis
That is really interesting what you have said about a chiropractor. Was it a normal one or a McTimoney one?
I've used a chiropractor on and off for over twenty-five years and have found it a great help with back and muscle pains so in a way I'm not that surprised that it has helped you. After all if anything is wrong with your skeleton it is bound to have a knock on effect.
Best wishes, Richard
alexis89205 RichardKen
Posted
Richard,
He's just a regular chiropractor. I've seen some that didn't help at all but this one seems to have a very good understanding of anatomy and how certain muscles being over or under worked can increase pain. He's helped me quite a bit with figuring out what muscles I need to strengthen in order to help manage my pain and headaches. And when I'm feeling a lot of pain and I'm not able to do the exercises he suggests he does an adjustment and that temporarily increases my flexibility which decreases my pain. Once my pain is under some control I'm able to continue with the exercises and I don't have to see him often.
Most chiropractors I've seen suggest a weekly adjustment. My chiropractor doesn't really prescribe to that thinking (thank god because it's EXPENSIVE to see anyone once a week). He's more on the "If it isn't broken don't fix it" side. And he also expects his patients to take the information he gives them and apply it in the form of stretches and exercises and help themselves. This is also very appreciated because as any person suffering from chronic pain can tell you...it's usually the things you do yourself that make the biggest difference. Doctors can be great and very helpful(some are the opposite but we won't get into that) but at the end of the day they aren't the ones in pain, we are and having ANY control is incredibly empowering, even if it's just an exercise or stretch that reduces the severity of pain only slightly it's better than nothing and it feels good to know I can do something to help myself.
If there is a lot of pain he will always see me but I like it that he doesn't try to bleed me dry with weekly visits. I come in every once in awhile and he gives me an adjustment and we go over all the exercises so he can correct any mistakes I'm making. In a way he is like a physical therapist/chiropractor which is really great because I don't have a ton of money to see a therapist and a chiropractor along with specialists etc. it adds up.
RichardKen alexis89205
Posted
Sounds as if you have found a really good sensible chiropractor. IMO it is NOT necessary to see a chiropractor for a weekly adjustment. I may not go for a couple of years and only go when I find that I need to.
All the best. Richard
bill38615 alexis89205
Posted
Alexis, this really is a horrible disease which takes massive mental strstrength get through the days. I understand how rest is important however very gentle excersise seems to help when not in an episode. I am currently 're learning how to breath as apparently even that is wrong and has a knock on effect with tending muscles. I have signed up to a research study that is being managed by Oxford university for physios throughout the country. I guess I am being a guinea pig however if it helps them gather info then just maybe they will start to get an understanding of this thing.
Sorry, not really much comfort for you at the moment but try distraction techniques,available on you tube and any other distractions that help, even for short times.
There is lots of information on diet however none of that seems to help me but may help you.
I hope the depression slides away as that takes you to the pits, I think that mentally being strong is about excersising your emotions positively, easier said than done but if you have things that make you feel good, do more of them, try talking to others with similar issues and even try joining disability groups who will have support networks.
I wish you well and hope that you have some relief soon.
Best wishes
Bill
Emily1234 alexis89205
Posted
I'm really sorry you feel this way, I did too a year ago for at least 8 months. Diet is key I quit coffee and wheat and dairy and bingo i felt 50 times better, I also started taking vit d and magnesium and vit e this helped tremendously, also you must reduce other stress if you can or take up yoga, give it a whirl and all good wishes to you xx
pamie28299 alexis89205
Posted
I am so terribly sorry you are going through this! I was diagnosed after my son was grown, thank goodness, because it would have been a challenge for sure! I took Cymbalta for a while which did nothing but give me night terrors. Then Lyrica for about a year, and all the doctor did was keep upping my dosage! He said there would be no withdrawals from stopping it-well, balony!!!! I was sick for months, with him just looking at me and saying "sorry". so I have taken vicodin, low dose two a day for the past five or six years. A year ago he upped the dosage to three a day. When I went in June for a checkup, he informed me that he had decided opiates were bad and didn't really help and the government was really getting aggressive about us old chronic pain patients and were on him constantly,sooo.....I'm weaning you off. I have been three and a half months without any, All the pain came back and brought more with it since I'm older now, as well. I have developed a few new ailments! Never feel like you have no support, please! this is a wonderful place, with plenty of sympathetic people who understand what you are talking about! I agree that trying to explain it to anyone who doesn't have it is nearly impossible, as they just think I am a hypochondriac. About anyone who doesn't have it doesn't believe in it. Take care!
alexis89205 pamie28299
Posted
Pamie,
I'm sorry for the late reply. Better late than never though right? Yeah, I asked my doctor about tramadol which is a non-traditional narcotic. It isn't as strong as the other, older narcotics. There was one study McGill I think, that showed narcotics didn't help improve quality of life for patients with fibro. There has been quite a bit of criticism about this study with some just dismissing it completely as flawed but doctor's got ahold of it and suddenly had a very nice excuse to not prescribe any type of opiates and even pull patients who were previously (and mostly successfully) managing their pain with opiates off of the medications. One medication that wasn't included in the McGill study was tramadol. Tramadol was shown in a separate study to improve quality of life for fibro patients. Try telling all that to a doctor though, in my experience they don't like their patients schooling them on medication, they become threatened I think.
When I asked for Tramadol you'd of thought I told him I was planning to go rob a bank. He was so rude about the whole thing as if I was asking him for heroin or something. I worry that he's documented that I'm a drug seeker in my medical file. After he refused to even try a very, very low dose to see if it improved my pain, I asked him what else we could do and he said "more gabapentin". We've already been through that. Why do we need to go there again? Sometimes it's just over and over with these doctor's until I feel like screaming and telling them they aren't the ones who are dealing with the pain everyday. How I wish I felt well enough to wake up and go in and work a full day.
Doctors are completely irrational right now about opiates. I agree they should be given in moderation and patients should be monitored but there is no reason that a person should have to live in pain when there's possibly a viable medication option. Right now there are two medications approved to treat fibro. If those medications don't work then we are out of luck. I feel so frustrated with doctor's right now!
I'm sorry they removed that option for you as it seems from what you said to have been at least partially controlling your pain. It just makes me so mad when doctor's pull the options right out from under us. Sometimes it's like what else is there for me to do but just go crawl in bed and deal with my pain privately? I hope things get better for you. I really do.
pamie28299 alexis89205
Posted
Thanks so much for your reply. yes, it's very frustrating for us all!!
jessica89076 alexis89205
Posted
Also, gabapentin and lyrica and only kinda the same. I’m on 900mg of gaba TID. When I was on lyrica I couldn’t stop crying and was super depressed. Ask your doctor if you can do epidurals or ablations. I’ve had both and they definitely helped me. Even just for a short time.
alexis89205 jessica89076
Posted
Hi Jessica,
I'm really sorry I didn't get back to you sooner. I felt pretty overwhelmed and then the holidays hit like a blizzard and I had started to feel better but then overdid it and now I'm still paying that price.
I go in for an appointment tomorrow and I will ask about the epidural or ablation. I get the results of a lot of tests tomorrow so I'm feeling pretty anxious. I don't intend to leave that office without some option other than gabapentin which hasn't been working.
I'd love to email back and forth. I don't have any fibro friends and reading all of the responses to my post was somewhat emotional because it made me feel less alone. I really appreciate your response. My husband is pretty supportive but has Ulcerative colitis himself and so he also deals with chronic health issues. Ironically we were both pretty healthy when we first got together, just bad luck I guess.