Ive been suffering for so long and been to so so many doctors and finally someone has diagnosed me with Fibro. The pain I have been feeling along with the chronic back and neck pain have been overwhelming and flat out unpleasant. the pain has been interfering with everything in my daily life. Any suggestions on what helps to ease the pain?
Hello Jess,
Mixed feelings for you, glad you have a diagnosis, but sad you are in pain. Everyone of us Fibro Warriors are different, and what works for one doesn't work for another. All I can suggest is to work with your doc, and find out what works for you. Hopefully you have a doc who believes in Fibro, and who you have trust in - that always helps ! For me, and i know for many on here, we have learnt to manage our pain, with gentle exercise, pacing, meditation and mindfulness. That is not to say it always works, but it is trial and error with this tricky condition. Wish you well
Take care, Anne
Hello Jess!
Welcome! I agree with Anne. As a mental health therapist mindfulness, stretching, meditation, and progressive muscle relaxation is key for me. I have known my diagnosis for 10 years before finally being diagnosed mid last year. As of late I am learning of reducing my stress to help ease my pain. I take small walks throughout my work day to help ease sore muscles and do progressive muscle relaxation and focus on the areas of most pain which we all know varies at any given time throughout the day. You kind of have to try some things out and figure which one works best for your body. Most of all stay in tune with your body’s signals and try not to push yourself too far when you get that burst of energy. Your body will thank you. Hang in the and stay connected with others who can and are willing to be supportive! Sending special thoughts and positive energy your way!
~ Yvonne
Thanks for the advice Anne! Much appreciated. I believe I finally found a doc who believes in fibro. I thought I had it for years but no one would diagnose me. I would go from neurologists, to chiropractors, to physical therapists, back to my primary and begin the cycle all over again. The fibro fog I’ve been experiencing over the last few months has been unreal. I’m always dazing out and can’t seem to concentrate too long. I get extremely dizzy and feel like I’m about to faint but dont actually faint. Ive had chronic migraines for almost a year now due to my neck…i have a straight cervical spine instead of a natural c shape due to whiplash from a car accident which I believe contributes greatly to the migraines as well as the fibro. Also, my SI joints are horrible and this Wednesday ill be getting si joint injections …not looking forward to that. Ive been getting 24 trigger point injections into my neck and entire back for a few months now but they dont seem to help. Just started cymbalta and hoping this will work.
Thanks bonnie! It gets it the point where heat, cold, exercise, stretching…nothing is helping. I get massages from my bf almost every night and yes during the time he does it it feels good but hurts at the same time.
Just got done a migraine that last 2 days straight. No break.
Finally getting a name for what is happening to you is a mixed blessing. On hand you are elated to have a name for what is going on in your body. You are not crazy. There is a name for what you are experiencing. On the other hand you soon realize that unlike some chronic illnesses there is no definitive course of treatment.
My advise is to allow your self to be sick. By that I mean if you need to cancel plans at the last minute because you are too exhausted or in too much pain allow yourself to do it. I would also counsel you to scale back your activities even when you are feeling good. You need to operate this way because when you are having a good day, or week or month you will want to push yourself to get as much done as possible. Unfortunately your new reality is that in the long run you are going to pay for this at a later date.
To reduce the pain you are experiencing you may need to try many different options. Some of them may be pain medications but some options may be different low impact exercises, dietary changes, acupuncture, or a nice relaxing bubble bath.
Good luck with your journey and remember you are not alone.
Hi Jess,
I too, have Fibro and a second whammy with Psoriatric Arthritis... the pain can be worse at times with either one.. so I try to treat them both the same... stretching for Fibro for me is key. heating pad, hot showers, massage, recumbant bike... just try to keep muscles moving if possible... do not sit or lay in bed for days, even though we would like to.. I find the best thing for me is to to something.. for just a few minutes.. rest 5 minutes, back up.. etc... lol... I look like Im on an overload of caffeine. - it really helps... ... If I have to do something that I cant take many breaks... I rest in between.. wherever I can .. lean up against a wall... at the store.. I rest on the grocery cart... etc. Hope this helps... ask any questions you have... we are here for ya!!!
Gentle hugs..
Karen
I wholeheartedly agree with Anne V. Work with your doc. Find your triggers, we all have them and they're different for all of us.Be kind to yourself and surround yourself with people who'll be supportive.
Best wishes,
Cindy
Has anyone ever tried acupuncture? If so, does it work? I'm about at my wit's end with this pain. I take Cymbalta but I honestly don't know how much it helps. I had been taking Tramadol, with minimal success, until my rheumatologist told me to stop it because it could possibly have a bad reaction with the Cymbalta. He also told me to lay off Excederin - just take Tylenol. Obviously he has never suffered from fibro. I'm going back this week to see what if anything else can help. So I'm thinking that I might try acupuncture next.
Anita
Wow. Thanks everyone for the comfort...it's much appreciated!
Anita,
Let me know how to goes. I am currently on both Cymbalta and Tramadol. I just started the Cymbalta so havent seen results yet but hopefully i will soon. The tramadol works, but i dont like to take it too often.
Jess said:
Wow. Thanks everyone for the comfort...it's much appreciated!
Anita,
Let me know how to goes. I am currently on both Cymbalta and Tramadol. I just started the Cymbalta so havent seen results yet but hopefully i will soon. The tramadol works, but i dont like to take it too often.
I have read the above replies with interest and it is true that some things will work for one and maybe not another with fibro. What is Cymbalta? It is probably another name for a drug out there. I have heard that Tramadol are very strong and can make you feel sick, I haven't tried them yet. Was taking Ibuprofen but they irritate my stomach and give me indigestion. I feel like an old crone a lot of the time it's so unfair!! Sorry moan over :)
Hi . Just stopped by to say hello and send you some
HUGGGGGGGGGGD
Suzie
Hi Jess,
Welcome. As difficult as it was for me to hear, I think the best advice I received when I was diagnosed, was to be open to all options and to be patient with the process. I didn't fully understand that, but now that I have experienced how different the medications and routines that aid our pain can be, I do. I also find that sometimes it is fatigue that overwhelms me as much as the pain, and that is definitely, for me, where the patience comes into play.
For pain, I have found Tramadol to be helpful, as well as Lidocaine patches.
I so agree with what others have said here about staying in tune with your body and allowing yourself to rest whenever rest is needed.
I am sorry for your diagnosis. You will find great support here.
Best wishes,
BooksandTunes
Lori, hang in there !
I wish you all the luck and happiness you can find in this tricky world. Prayers are being sent your way. Faith is a powerful thing, but I’m with you when you said you start to wonder about it.
Thanks Jess,
Sorry, I took and copied my post and pasted it on a different discussion board on fibromyalgia.
Thanks for the prayers. I know they do work, I just need to FOCUS.
((((((Hugs)))))))))
Jess said:
Lori, hang in there !
I wish you all the luck and happiness you can find in this tricky world. Prayers are being sent your way. Faith is a powerful thing, but I’m with you when you said you start to wonder about it.
HI everyone!
I'm sorry for the pain youre in, sounds almost exactly like me though:[ I've tried both of those meds along with gosh knows how many more. Right now I'm on Zoloft and 2300mg of Gabapentine. I do tai chi everyday and swim three times a week and try to get out and birdwatch but I haven't been able to do alot of the outdoor stuff since winter is here. Does anyone else get awful pressure pain in their like glutes/thigh socket almost when outside in the cold. The pain gets so overwhelming that I literally can't walk anymore. I'm 21 years old and don't think I should be in this much pain plus my usual pain in my back neck and pretty much my whole body. I don't just lay down all the time but I can't seem to be able to leave the house. I can only do small chores even. I can't do laundry or lift a pot of hot water neither! I really want to get medical marijuana because I already smoke some now for the pain but smoking is really hurting my throat plus I can't always buy it, it's obviously all depending on other people's schedules, so I'm just in extra pain. Plus it helps with sleeping because pain keeps me up at night as well. I was hoping to get stronger medicine anyways that is grown for fibro plus edibles would help more anyways or oils. Anyways, the original doctor that diagnosed me isn't covered by my insurance anymore and the doctor he sent me to is stupid... she said I could go back to banquet serving and lifting 50lbs and I have a very very mild case of fibro. My massage therapist thought she was crazy and got furious anyways, I'm in really bad shape and need help! My primary wants to help so much but he can't prescribe the medical to me but he said he'll help me with disability so I can at least afford my appointments, gas, etc. Please I need help! I've seen so many doctors that think I'm faking!
All these replies show you how different each of us responds to Fibro and all the drugs and treatments doctors have us try. By the way, there is no such thing as a "mild" case of fibro, just good days and bad. I thought I wasn't that bad although my life was in the tank. But the first time I took a morphine (MS Contin) and was in NO pain for a while (until I exacerbated things again- cooked dinner, drove to work or something) I realized how much pain I was normally in. Much more than I thought.
After trying quite a bit and still having problems functioning well at work I quit. I tried cymbalta, savella, lyrica (which caused lots of swelling as well as increased stupidity), and gabapentin. I am now on cymbalta which helps some plus morphine sulfate tablets (MS Contin) plus magnesium, potassium, vitamin D, diabetes med, and prilosec for my upset gut. I tried patches (allergic), epidural injections, chiropractic manipulation, acupuncture, etc. What seems to help most is routine pain meds, walking and tai chi. Do not drink any alcohol if you take any tylenol. According to my doc.
I find that for each task I do I have to sit down after each half hour or so, relax, and rest for 20-30 minutes. On foggy days, my husband reminds me to take my pills, and double checks the stove in the evening to be sure all the burners are off. I have cats to pet and meditation or deep breathing for stress.
I also take Norco/Vicoden for break thru pain. I get the morphine and norco from a pain doc/neurologist who does periodic urine tests to prevent abuse.
I went through a counseling program, Take Courage Coaching at takecouragecoaching.com, that taught me coping strategies. The program has us use distraction to help pain and all the usual (meditation, exercise, eat right, drink water, sleep, etc) but the full year of twice weekly counseling sessions helping me through each challenge and crisis really brings it all home and helps it stick. After that year there is also follow-on support. It really helped me reach acceptance. And it's harder to complain (I still do) when I know things I can do that will help my current low.
A mood booster was reading Gratitude Diaries by Janice Kaplan. I can always find something to be grateful for. Like this group of supporters.
Good luck, it takes time.
welcome to this site. I have had fibro 35 years. I have none of the trigger points and was diagnosed the first day I saw the rheumatologist I am 72. I have suffered tremendously, and also had periods of relief. Cymbalta, Savella, Topomax all gave me hallucinations.. Lyrca and Neurontin piled on the weight FAST. so for 10 years I have taken a codeine narcotic and Xanax. the REAL help was cortisone, and I knew the risks, but it finally has caused osteoporosis. I agree with the stretching and keep moving. you don't have to run the marathon, but you cannot just sit or lay and get stiffer and worse. I think each of us is different and at the same time the same. Don't look for a fast cure, but do as suggested by several and treat yourself in a different manner. its not easy,, but it can be done. I was divorced, raised 2 daughters, worked full time and did everything other people did. when I was too sick, I simply said, I don't feel well enough to do that today, can I take a raincheck. Good Luck.
Hi Jess,
Some great helpful ideas already here already, I favour swimming, tai chi and walking as my main exercise, my local gym run some really good pool based exercises which really help, along with exercise classes which are dance based and very low impact mainly laid on for us over 50s. Like SNEAKERS1 I have PsA as well so often its hard to work out which is causing problems, but as both conditions benefit from the same lifestyle changes, at least that doesn’t confuse what I need to do. I take gabapentin 300mg 3 x daily, co-codamol as required for pain (although I tend to use them more for migraine) and arcoxia which keeps the costochronditis under control. Keeping moving is a must for me as for many others. I was lucky enough to be referred to a pain management programme by my Rheumatologist, which taught me the idea of acceptance, commitment, mindfulness and meditation, all within the CBT frame of mind, as it were. Its been very helpful for me, but I know it isn’t for everyone and involves a lot hard work, both mentally and physically.