So so sorry for all you are enduring. I read almost every response and all of them have good advice .If you have found the right physician, you are so very blessed. Most of us never do. Do not know anything else that I could add except the boat is getting bigger and the symptoms keep mutating. God bless you and know your feelings are validated and you are cared about in this group of friends who truly appreciate your situation and are here 24/7. If you need to talk; I sm hete for any of you. This has been going on gor me since 1993...Diag. 1996. It is a real life altering experience.
So so sorry for all you are enduring. I read almost every response and all of them have good advice .If you have found the right physician, you are so very blessed. Most of us never do. Do not know anything else that I could add except the boat is getting bigger and the symptoms keep mutating. God bless you and know your feelings are validated and you are cared about in this group of friends who truly appreciate your situation and are here 24/7.
Injuries on top of fibro is not as easy thing to cope with. During my last job as a librarian, I developed tendonitis in both elbows and an injury to my left shoulder. While recovering from these injuries, I developed frozen shoulder on my right side. I could only sleep in one position, if I slept! Five years later, I'm doing better, but have to watch what I do, not to over do it. Worker's Comp was a difficult process that still hasn't ended. I have a physical therapist that works out of her home that has helped me the most. She releases my muscle spasms like nothing else. It's almost like acupressure and gentle pt stretches. I've been going to her for 12 years now. She is not covered under my current insurance, so I can't afford to go often which too bad for me. If you could find someone to work with you that is very gentle, it may really help.
Page 1 people (sorry I am too tired to list all names),
I just saw your responses now- I was trying to see everything before, but I was on my cell and didn't see there were multiple pages. Evysmom, does sound like we are very similar. I crave weight also, I am so grateful for central air, bc I put the same amout of blankets on year round. Thank you for the link I will look at it. Someone else mentioned homeopathy type help, and I completely agree that western medicine is not the end all be all. I am trying to learn about essential oils and eating right, and meditation.
My Neuro also has Fibro, and while I wouldn't wish it on anyone I am grateful that she knows some things from experience.
I have no idea how the weight fell on my foot, I wasn't using it. In fact I was only standing next to the rack it was on, and it fell. I have to admitt I did not seek treatment for it. I have always heard there is nothing that can be done for a broken toe. So, I finished my workout and taped 2 toes togeter when I got home.
I am so very glad that I found this group. Everyone is so helpful & kind, and I pray for you all, and sent positive energy out also.
I think most of the things I use have been mentioned except Acupuncture. It helps more than I expected and now I do monthly treatments. In addition, I plan ahead so I can get in the rest I need between activities and/or between steps of tasks. Fibro is funny, I never know what will set off worse pain or help the pain. It can be something that worked differently the day before. So things to help pain: alternative medicines (I also take potassium with the magnesium to help with cramps), vitamins and minerals although everything in moderation including moderation, I drink wine occasionally to relax me along with meditation. I walk a little about every other day. I use a timer for pacing, both to interrupt me when I'm doing something taxing as well as to limit my recuperation times when I have something that must get done that day. I cuddle and pet my cats. I listen to music. I remind myself of the things I'm grateful for such as: my understanding husband who can also be a pusher of getting outside and taking a walk in the fresh air, my agreement with him that he will do the dishes if I cook the meal, the fact that frozen foods have gotten healthier and more tasty, the maid who cleans my house every month, the library that provides lots of reading material and ebooks. What are you grateful for? I keep a journal where I track good days and bad days, what helped and what did not, and how my drugs are or are not working.
It sounds like you have a good support team and now you have us. We will always listen. I got a kick out of the topic started on dream vacations. Hugs,
The flares are very difficult. I always ask myself "what did I do that triggered it?" I pamper my central nervous system by limiting stimulation. I stay away from bright lights ( stores ). I limit noise and lay down in a dark room. I will take advil, tramadol and get a heating pad or ice. I find stretches help somewhat with the joint pain.
A lot of my pain stemmed from the fact I was not getting restful sleep. So I take meds that address falling asleep and staying asleep (Elavil, Advil pm, ativan (low dose) and for my bipolar I take Risperdone and lamictal. All of them combined make me sleepy and the deep sleep helps reduce pain during the day. I read that about 70% of fibro patients have bipolar. My manic symptoms aggravated my regular sleep patterns and activities.
I encourage you to have your foot x-rayed, as you may have fractured your foot, like I did. I walked on it for a couple of weeks, thinking it was only the two toes that were broken, but it got to where the pain was too intense to walk. Went to doctor and he gave me a special boot to wear. That was awhile back, so I don't remember if the toes were taped or not, but the boot helped reduce the pain immensely.
Mary
shmoots1 said:
Page 1 people (sorry I am too tired to list all names),
I just saw your responses now- I was trying to see everything before, but I was on my cell and didn't see there were multiple pages. Evysmom, does sound like we are very similar. I crave weight also, I am so grateful for central air, bc I put the same amout of blankets on year round. Thank you for the link I will look at it. Someone else mentioned homeopathy type help, and I completely agree that western medicine is not the end all be all. I am trying to learn about essential oils and eating right, and meditation.
My Neuro also has Fibro, and while I wouldn't wish it on anyone I am grateful that she knows some things from experience.
I have no idea how the weight fell on my foot, I wasn't using it. In fact I was only standing next to the rack it was on, and it fell. I have to admitt I did not seek treatment for it. I have always heard there is nothing that can be done for a broken toe. So, I finished my workout and taped 2 toes togeter when I got home.
I am so very glad that I found this group. Everyone is so helpful & kind, and I pray for you all, and sent positive energy out also.
We need a 'Like' button - everyone has such great insight, experience, and input! I feel better just knowing you're all here and understand what we're all going through. I forward many comments to my husband, to give him a better understanding of our issues. Thank you.
Yesterday I ordered Sleep 360 and am hoping this natural supplement will help me sleep throughout the night. Lack of sleep is a huge part of my problem.
dozer said:
Hi Shmoots1,
The flares are very difficult. I always ask myself "what did I do that triggered it?" I pamper my central nervous system by limiting stimulation. I stay away from bright lights ( stores ). I limit noise and lay down in a dark room. I will take advil, tramadol and get a heating pad or ice. I find stretches help somewhat with the joint pain.
A lot of my pain stemmed from the fact I was not getting restful sleep. So I take meds that address falling asleep and staying asleep (Elavil, Advil pm, ativan (low dose) and for my bipolar I take Risperdone and lamictal. All of them combined make me sleepy and the deep sleep helps reduce pain during the day. I read that about 70% of fibro patients have bipolar. My manic symptoms aggravated my regular sleep patterns and activities.
I stood up from sitting on the sofa last week and something popped in my R leg. It hurt so much I could not stand on it. Called Dr went in and had shots to back. Set up MRI for 6/25. My house has 3 different flights of stairs plus the ones getting in the house. I stayed in bed for a few days, but children and grandchildren came this past weekend. I slept in recliner because I have to use crutch to go upstairs and walker. Called my doctor and said the crutches/walker are making Fibro worse. Don't know what I thought he could do. I couldn't think what to do. Just stay still until MRI? Now they called today and want to see me. I told her I shouldn't have called and asked her what good it would do. They are going to call me back. The thought of getting dressed and all that I will need to do feels overwhelming right now. Wish I could think clearly so I could realize to wait and think things through before acting. Just needed to talk and you all understand when no one else does. My husband is really good about it, but I know he gets tired of it all. I guess I need to read my Bible and renew my strength. Thank you all for listening. You are currently my one of the most important part that keeps me going.
I’m sorry for all the pain you’re in and all the trouble you’ve had recently. I’m not been on Lyrica so I can’t speak to that, however, I do have a friend that takes it and doesn’t like it either. She is been a medical marijuana for several months now and finds it helps her a great deal. Good luck.
Hi Kim -- Weaning off of Lyrica is the pits and I am really sorry you are feeling so lousy. I went through weeks of extreme difficulty coming off of that drug (sweating profusely all the time, much worse pain, very jittery, sleep disturbances, etc.) Here are things I have done since. I am better now than I was on Lyrica -- both physically and mentally. Friends say I seem "more like myself".
Added topomax to meds (along with cymbalta, wellbutrin, and as needed Norco and muscle relaxers)
Added supplements -- turmeric, triphala, magnesium, probiotic, multivitamin plus extra B, D & E
Added mediation -- If this is new to you, I'd suggest trying a class or simply using one of the many guided meditations on YouTube. Start with 10-15 minutes and build up from there. For me, 30-60 minutes is best depending on the day.
Eat less meat, more veggies
Epsom baths
The bottom line for me is that one big thing doesn't help much but lots of small things, done consistently, do. I hope this offers a little help. If nothing else, I am thinking about you today and sending positive thoughts and wishes your way! Amy
Cheryl, that is what happened to me. After the POP I couldn't put any weight on it. The next day I got up and started walking a little. My leg was so stiff I had a very noticabole limp. I wrapped my calf with an ACE bandage for the next few days and it seemed to heal fairly well. If not for dropping the weight on foot (the same leg btw), I would be walking normally. lol
Cindy & Amy, I liked Lyrica. From the time I first started taking it I thought it was a Godsend, but I started to swell so bad I wasn't sure what was worse; the swelling or the pain.
I had been on Topamax for about 10+ years for migraines, but my Nuero took me off because as a side effect I was having trouble speaking, even finding words. I also had side effects from wellbutrin (tremors). I used to take Epsom baths, but that says right on the label not to use if you are diabetic.
I do take a multi, and my pcp is having me add some more vitamins. I also had gastric surgery tho, so I don't absorb nutrients like I should. I have to take the vitamins.
And just reading this back to myjself I am realizing just what a "hot mess" I am. lol
Hi! For tight muscle pain like that, massage is the BEST thing! Just get a friend to give you sholder rubs and try massaging things like, capsicum cream, deep heat, voltarin, anti flamme or arnica into sore places and onto your feet even if the dont hurt, as that helps to relax all around your neck and shoulders. Also you could ask if your doctor would prescribe diclofinac or orphenadrine to you as they help a lot with tight muscle pain and achey ness.
If it doesnt get better and you want to take no/less pain medication you should definitely try getting a prescription for Low Dose Naltrexone (Called LDN) it is commonly used as and opiod blocker, but in such a small does (4.5 mg) it just makes your body produce a lot more dopamine, which acts as a natural pain releif. LDN is the BEST thing I have ever tried!!! Its made more difference than everything else I have tried combined! It helps me sleep and means I dont feel achy in the morning and can go days without pain releif or massage. Before talking LDN I always felt horribly achy and sore in the mornings and had to take at least a mix of 9 different strong painkillers and needed at least one back massage a day. So it definitely help.
I see so many talking about massages. I would like to ask how can you stand a massage? I can not stand for anyone to touch me and hate the mattress to touch my body. I have had it for 28 years, maybe I am in a more advanced stage. But I have heard people say that have it for a year. Please don't touch me. When everything inside the skin hurts, it hurts for you to be touched.
Everyone is helpful; I really can't stress enough how blessed I feel that I found this place and all you!
Indi, I already take diclofenac, 50mg 2x/day
Liz, when I am flaring, I especially feel like I cannot stand to be touched. brushing my hair is sometimes a problem. But there are those occassions that having my shoulders rubbed feels great.
I see so many talking about massages. I would like to ask how can you stand a massage? I can not stand for anyone to touch me and hate the mattress to touch my body. I have had it for 28 years, maybe I am in a more advanced stage. But I have heard people say that have it for a year. Please don't touch me. When everything inside the skin hurts, it hurts for you to be touched.
I have to agree with you on the matter of massage. It's too much for my nervous system. More irritating than relaxing and often just painful. However on the bed front I broke down and spent the money on a Sleep Number bed. Expensive yes, but they have both financing and payment plans. Since getting my bed my sleep has improved by at least sixty percent. It has helped take off the physical pressure so as to relief some of the pain too. It's just another cog in the treatment plan but a big one. The things is no matter what you chose we should all see to it that we have the best possible bed. The better the sleep the better off we are. Thanks for listening again.
I am sorry about what you're going through. I know when my pain was at it's worst, it was very difficult to cope. I would try to have a positive attitude but sometimes it was very tough. In the short term, my advise would be to try and reduce any unnecessary stress, eat healthy, exercise, get good sleep, and seek out support. I know that doing all of these things can be challenging, but they should be our daily goals. Make it a conscious decision to take care of yourself, and make your health your number one priority! In the long term, I would recommend that you find a doctor that believes in treating the underlying cause of FM. In my case, it was a chiropractic neurologist. He believed that FM was caused by a chronic immune response to something in my system that my immune system thought was foreign, so it was attacking my body. One of the tests that I had done was a blood test for food sensitivities, which showed that I was sensitive to many foods, including gluten, dairy, and corn. Based on these results, I completely cut out all of the foods I am sensitive to. Within 4 months, my FM was 90% better. And, it's stayed that way for almost 3 years now. I will have occasional flareups of pain if I cheat or if I unknowingly eat something that has corn in it. But, I feel alive again and I'm enjoying my life now, not just gritting and bearing it every day like I used to. The most important thing to remember is that, if you have the blood test done, that you follow it 100%, especially until your pain is significantly better. If you don't, you won't get the positive results and you will think that it's not working and give up. Let me know if you have any questions. I would be happy to tell you more. I wish you all the best. Dave