Hi all,
I’m new to the site and glad to finally have a support group option as nobody seems to be able to offer much beyond medication. I was diagnosed four years ago after about a decade seeking answers.
I’ve tried both Lyrica (no help there, just drowsy) and Cymbalta (caused new muscle spasms). I was also prescribed Tramadol when the pain got really bad and the side effects to that one were an A grade nightmare! Currently I’m on Panadol Osteo, but I’m not seeing much help there either and can only stick with it for so long due to potential for side effects. I managed to secure an appointment with a pain clinic in the last week- in August… but I’ve been warned they may only offer stronger medications.
I go to physio every three weeks and so far that’s the only thing that has been consistently helpful, as well as working with a psychologist, including CBT.
Can anyone offer advice regarding what works for them when things flare up, other than medication- I get so pain sensitive I’m scared of trying massage when it’s bad and my lovely dogs can only help so much. As I’ve seen some improvement physically I’ve found it harder to deal with the setbacks mentally, especially when the pain seems like it will never end.
I really want to be there and everything my Kindergarten class needs, but when the pain is bad it is difficult to be what I want to be and I don’t want my class to suffer for that!
Hi there, Jess
While you wait for some of your community friends to respond, have you looked through our Complementary Therapies section? Find threads that sound interesting to you, and post to them. When you do that, the other participants on that thread get notification of your post, and maybe you can kickstart the discussion again!
Hope you’re having a good weekend.
Seenie from Moderator Support
PS where are you? “Moss Vale” … which country is that? You mention panadol osteo, which is not what it’s called in the US. Are you in the UK? Stating your location accurately can bring you great “local knowledge” from people in your area.
Thanks for your response, I’ll look into that thread and see what I can
find.
I’m not in the US or U.K., I’m in Australia, Moss Vale is a small semi
rural town two hours south of Sydney.
Thanks,
Jess
I looked at the alternative list and didn’t see Boswellia. I heard about it from a woman on a train two years ago and I daily bless that chance meeting. I was in a world of hurt with nothing to ease my pain. I can’t take any of the usual pain meds. You need to research it for yourself, but if you can’t tolerate prescription meds, it might work for you. Non-addictive, no side effects but don’t take it if you are pregnant or planning to become pregnant.
The list also didn’t have essential oils on it. I use Frankincense (same family as boswellia), helichrysm and peppermint for headaches and joint pain. My doctor thinks I’m nuts but I know my doctor is simply uneducated and jealous. I’ve done the research.
Thanks Kronicchick. I’m currently looking for a wholistic therapist in my area who might be able to get me started on using the kind of oils and supplements you have described, because the results sound so positive and I need a bit of that in terms of treatments. As a kindergarten teacher I find very little time to do the research myself, but I’ll certainly keep it in mind!
I totally hear you on medications having adverse effects, so far I’ve tried two medications but both had HORRIBLE side effects. Here are a couple things I’ve found helpful.
Restorative yoga- unlike the yoga you find in most gyms (at least in the US) it focuses on helping the body heal and relax rather than strength training or flexibility and it can have a meditation/positive visualization aspect to it. It works great for calming down my nervous system.
Manual Lymph Drainage Massage (MLD)- Its a massage that uses extremely light pressure. It really helps calm down my nervous system when I’'m having a flare. It really feels like a reset button.
Aquatic therapy-basically physical therapy in a pool. Personally I find being in water, whether a in a pool or a bath tub cuts down on pain, and swimming helps prevent muscle spasms.
First off, it’s great to meet you. Fibromyalgia can be so challenging can’t it? I was diagnosed 8 years ago and I have challenges with it on a daily basis. I am on Lyrica and it has worked for me (I think). I know if I were to miss a dose I would become so sore I wouldn’t be able to move. Cymbalta is a lousy drug and I don’t recommend it for anyone. I’ve mentioned in other threads that my PCP put me on Cymbalta and it just made me feel incredibly weird. She told me she was taking all her patients off of it because she didn’t like the side effects everyone was having. I was also on Tramadol and that worked in the beginning. My partner has been on it for at least 15 years. I did get referred to a Pain Dr. and luckily I have a good pain dr that will listen. This is very important. If this doctor does not listen well to you, don’t be afraid to ask for a new doctor. They will get an idea of what kind of pain your experiencing and what they can do to solve it. I am currently on Oxycodone 5mg 3 to 4 times a day PLUS a Fentanyl patch 25mcg change every 3 days. I am getting off the Fentanyl patch because it’s too potent. It’s not wise to be on it unless your physically unable to move and you’d like to sleep all day. I am changing to Oxycotin 10mg twice a day and Oxycodone 5mg as needed. The difference between the two drugs is Oxycodone is quick acting within 20 mins and Oxycotin goes throughout the day and NO Fentanyl. They will most likely start you on a low dose of something. It may take some time to find a medication that works good for you and you may find out years later it no longer works and then its time for a new medication.
Do you see a Rheumatologist? I pain Dr. I think is only going to help you with removing the pain as much as possible.
I am also pain sensitive where my friends kid around because if I am just slightly poked it hurts. I can’t do massage either. I have 2 cats and they do help.
I’m sorry your dealing with your pain. It can be very frustrating and your mind starts to think too much. My advice is to take one day at a time. See your Pain Dr. and explain exactly what you mentioned here. As for other fibromyalgia drugs I’m not sure as to what else is out there. It sounds like Tramadol is not working for you when your having your intense pain and perhaps you need something a little stronger. Either that or they can increase your Tramadol.
Good luck and keep us informed! I hope I helped in some way.
~David
P.S On a side note, as I sent this reply I saw you initially sent this out in April before I became a member. Whoopsie. In any case I just saw everyone elses ideas. I do like the swimming idea. That does help.
Thanks for the reply David. I’ve finally been able to see the pain doc (booked the appointment in April, the earliest I could get was August) and he explained the pain and the way it works, which was interesting and helps with the approach to living with the issues. The pain doc also said he’s seen significant side effects, with the meds causing pain, so it’s probably a good thing I don’t tolerate them. I’m also working with a wholistic therapist (love the wider approach, he’s trained in a number of areas including naturopathy, homeopathy, kinesiology) and that’s helped, as well as a wonderful physio.
Yay! Hey, if you have a friend who sells essential oils, some of those reps are very knowledgeable and have already done all the work. I know my rep gave me the best advice when my mind was too foggy to decide for itself.
I just saw your replies! I’m having a time with the learning curve of this site. The peppermint oil, right? I was floored the first time I used it on a headache. The headache just melted away!
You might find someone online to help you with wholistic therapy. There are so many people putting their skills out there right now. Some have amazing programs and they aren’t as greedy as the corporations. Lots of them are working from home so they can be home with kids. A lot of them offer free offers, like an e-book or list of 5 things. If you sign up to read their stuff, you can always unsubscribe - anytime. They all offer paid courses, retreats, etc… but you get to sample their business before you have to pay. If you Facebook, I’m sure you see their ads all the time. If you haven’t, just post a few memes about essential oils and the Almighty Algorithm will instantly supply them.
In the past year. I’ve done three things of this nature; one was an in-person seminar and two were online education and interaction. I enjoyed the seminar and continue to learn from the blog and with the other two, I was pleased with the one-on-one interaction and I didn’t have to leave my house, or my pajamas.
Kindergarten - if you have mental fogs, check out supplements: L-Glutathione and Choline.
thank you people so so much for all of these recommendations. i’m a newbie here. some months ago got diagnosed after lots of misdiagnoses like low hgh and many others… now i was searching for information on how to deal with all of this and this site seemed to be the best out of them all… also found a lot of helpful info here which is why i’m so happy!
Thanks again for the tips. I’m also new to navigating and it takes me a while to spot things. I’ve gone back to working with a wholistic therapist who is a close family friend and it’s been wonderful. Making positive changes and he looks out for me really well!
It’s always worth looking into diet options, so I keep an open mind. I’ve tried a few changes over the years that haven’t worked out as I’d hoped, but you never know when you’ll find the right one, so any advice is welcome!
Of course @Jess111 ! Wow such a long time you had to wait for your appointment. Unbelievable. We all have different genetic make-ups so one thing might work for me but not work for you and vice versa. Everyone has to find that thing that helps them. It’s great you have found the holistic therapist. It’s also great when they know so much that can help you. Good luck!
I use all alternative medicine except for a couple otc pain meds that I take on a 6 hr schedule, so 4 times daily.
My favorite of all supports are:
Grape Seed Extract
Magnesium
MSM Powder
Desiccated Thyroid Support (I believe thyroid and FM are so connected).
I don’t do well at all on synthetic thyroid med.
I have tried many other supplements but I would not be without the ones I mention. I’ll post more as I go along…I’m new here. I don’t know how old this thread is.
Thanks for this. I haven’t had any additions to the thread for a while, but things are always changing, so I was really glad to hear another perspective. Welcome to the group!
Hi @jaminhealth and welcome to the site. I’m curious as to why you believe thyroid and FM are connected. Thyroid can be checked by a simple blood test and mine is normal yet I have fibro so i’m interested in your thoughts on it. Hope you are well!
Thanks and I am pretty well, and it’s not just me who believes thyroid and FM are connected…for years I attended a support group at one of our hospitals here and had docs and others come to lecture…
Getting the thyroid right, is not Easy, and just because we are in range, means almost nothing…we are not numbers…we are symptoms and I went for 10 yrs with in range labs on thyroid and when a D.O. finally called in for support, no labs, I felt like a new person in a short time. This all started for me back in 1991 and I never got help for the 10 yrs of depression, and when I was “hit” with emotional mess and I went into fight/flight/fright, I truly believe if I had been s upported earlier my issues were been milder.
I’ve been told I have Fibro from an endo dr. during the 10 yrs of seeking help and then I put it all together…hope this all makes sense…I’m going back yrs with my issues…I’ve been taking desiccated thyroid support since 2002 and if I have Fibro, it’s mild…
My issues are MOSTLY arthritis…hope this all makes sense.
BTW: Do a search for thyroid and fibro conneciton and see what comes up.
I can add here, and many are on the wrong thyroid meds if they take them, t he synthetic ones contain only T4 and a lot do not convert to T3 in their bodies…and that is why I take desiccated supports…they contain everything and have been around long before the synthetic ones came on the scene,
Fibromyalgia can be so challenging can’t it? I was diagnosed 8 years ago and I have challenges with it on a daily basis. I am on Lyrica and it has worked for me (I think). I know if I were to miss a dose I would become so sore I wouldn’t be able to move. Cymbalta is a lousy drug and I don’t recommend it for anyone. I’ve mentioned in other threads that my PCP put me on Cymbalta and it just made me feel incredibly weird. She told me she was taking all her patients off of it because she didn’t like the side effects everyone was having. I was also on Tramadol and that worked in the beginning. My partner has been on it for at least 15 years. I did get referred to a Pain Dr. and luckily I have a good pain dr that will listen. This is very important. If this doctor does not listen well to you, don’t be afraid to ask for a new doctor. They will get an idea of what kind of pain your experiencing and what they can do to solve it. I am currently on Oxycodone 5mg 3 to 4 times a day PLUS a Fentanyl patch 25mcg change every 3 days. I am getting off the Fentanyl patch because it’s too potent. It’s not wise to be on it unless your physically unable to move and you’d like to sleep all day. I am changing to Oxycotin 10mg twice a day and Oxycodone 5mg as needed. The difference between the two drugs is Oxycodone is quick acting within 20 mins and Oxycotin goes throughout the day and NO Fentanyl. They will most likely start you on a low dose of something. It may take some time to find a medication that works good for you and you may find out years later it no longer works and then its time for a new medication.