Quantcast

Living With Fibromyalgia - Online Support Group

Help needed

Has anyone any ideas on what I can do next? I have had fibro and IBS for about 9 years, and has slowly been getting worse and now it is just dreadful. My back pain is really bad and my stomach and down the sides of body bad as well. I can’t take painkillers as they make stomach worse, so just take paracetamol which doesn’t really help. I feel like my back is slowly giving way it gets so bad. I’ve tried all the other herbal or alternative things I have heard about but nothing helps. The doctor is no help either and gave me aweb address to book to tak to someone, have to pay for it and can’t book till September! Any help/ideas would be welcome.
Sue.

SueT, I have had fibro for about 10 years. I’ve tried lots of things but the one thing that is helping my pain is LDN (low dose naltrexone). I’m able to continue working thanks to it. I’m also taking lyrica and Effexor which I’ve been on for 7 years but they were not as effective Until the doctor recently added the LDN. I hope this helps.

1 Like

Hi SueT, I’m so sorry, I know it’s frustrating not to get help from doctors or have to wait for months at a time.
I’ve struggled with back pain and ended up ruining my stomach due to anti-inflamatory meds. A few things I’ve tried that have really helped: physical therapy/yoga (go very slowly, gentle stretches and then work on core strength to help support the back), topicals are helpful when you can’t take oral meds–Deep Blue Rub is STRONG muscle rub from DoTerra, topical CBD can also help. If you are suffered from a nerve pain or sciatica, a TENs unit is another drug free way to deal with pain.

So sorry—I’ve had this for over 25 years. I had IBS a long time. First, have Dr. check your D3 levels (not just D, but D3) it should be around 60–I have to take 20,000 units a day, but I don’t get any sun. If you still get some sun, you may need less. That helps with pain, esp. back pain. You need to have your blood done about every 3-4 months to be sure of levels, you can get too much.
For my IBS, I found that muscle relaxants helped a lot. I was on those for a few years, the IBS eventually just went away. I’ve not been on muscle relaxants for years now and it has not returned. Also, I took medical Marijuana for about 2 1/2 years. Never smoked it. I made a tea of it, .9 gm to I quart water which I put in blender till it was very fine and did not strain. I never got high. Added lecithin after cooking it in crockpot for 8 hours with coconut oil. Added the lecithin as coconut oil gets very hard when cold. I added 1/3 c Lecithin while it was still hot–drank 1/2 c twice a day. It worked wonders on me, literally saved my life. I only quit as I just could not afford it anymore.
But I never went back to my former levels of pain—which was crying every day and just wanting to die. I had bleeding, painful gums which quite after about 3 weeks of taking it—that too never came back. You could just use 1 gm, I was trying to use as little as possible.

Try acupucture. I have been during this for about 8 months. It helps as I have stage IV mastesis breast cancer to bone on along with the fibro

Sue - I know exactly how you feel. I am 76 and got fibro after a measles shot when i was in college when i was 35. 41 years of torture. naltrexone is a med to taper you off of narcotics. were you taking narcotic? My GP gave me 8 norco a day, then sent me to a pain doc. the pain doc gave me naltrexone to clean my system and put me on 3 Aleve a day. He wants to insert a 24/7 TENS strip into my spine but i wont let him. I have a regular TENS i can use on worst days. I do not sleep well until about 5 in the morning. I have tried all meds, lyrica, cymbalta, savella, CBD, you name it. If I could find a good native American medicine man, I believe that herbs and sweat lodge would help. I just cannot use illegal drugs…what if i would die. What shame for my family. But believe me, I have thought of every possibility. Sheer determination gets me painfully out of bed in the morning. I freeze wet washrags in zip lock bags. i take an aleve, sit on those ice packs, then eat some sort of breakfast with strong coffee. I cannot do physical therapy, it is very painful the following day. Distraction helps… i photograph birds, after a bath ( I can only manage 3 a week) i put on makeup and drive out to our lake. I have a couple of friends that i visit on phone and grandsons that I face-time. IF there was a cure for this disease, whoever discovers it would be wealthy. My best advice is to read everything on here. Try some of the “remedies” from persons on all subjects and then improvise. some of our relief does not come from meds, but from other sources. We all know the pain, how our lives are affected. I often feel better in late afternoon and evening. Good luck. Please write again soon.

tlandes67 I will pray for you. acupuncture does help some people greatly. My sister had stage 4 breast cancer at age 43. After extensive surgery, she ate more healthy, exercised more, prayed and at times forced herself out of bed to care for her family. She refused chemo --She died a few months ago at the age of 94. I believe you are that kind of personality, and I wish only the best days for you.

Hi,

I have had fibro since i was a child, mine is genetic…my mom and an older sister and 1 daughter has it…

Many different things help me…it has always been trial and error and my fibro tool box , is deep…

I do use an anti inflamatory, with food…my therapist says the inflammation is at the cellular level , they believe caused by a latent virus…so my bloodwork shows low inflamation, but i can hardly move with out it…

The writer who said vit d 3 , its so true…i managed my fibro til one winter my d level dropped , i felt 95… i did do better after i got my levels up…i take 10,000 a day in the winter…and 5,000 this time of day when i get sun…

I take like very low tramadol, i cannot tolerate it at normal doses but it does help tamp the pain down.

It seemed to limit my list…:blush:

A tens unit actually hurts me , but i do use a microcurrent unit , which is more gentle

D ribose m , helps with energy and pain

The most important thing is you can find something that will help…

A type of therapy which helps me is called strain and counter strain…they just manipulate your muscles on the table

Thats my beginners book :woman_shrugging:t2:

Lmd

Hi Cathy,
Thank you for the reply, have not heard about LDN, last time I saw the doc she said there was nothing else to try. I am in the UK, are you as well? I haven’t found a group near where I live to join either to go and talk to people. Will be asking about LDN next time I go to the doc, don’t know when that will be though.
Sue.

Hi, teachyhealthymom,
Thank you for the reply, my stomach has always been a bit ‘touchy’ but the last few years have been worse, tight and bloated, always feels like I have eaten an elephant or something large. Doc says it’s the IBS and fibro. I do stretches, and have been for years now, I also tried yoga but couldn’t get on with it. Have just had a couple of fibro books for my birthday so will be going through those to see if any help. I use Ibuprofen gel and Deep Heat on my back when really bad, don’t know the Deep Blue Rub so will have to look into that one. Tried the liquid CBD but didn’t help and expensive here, were in the UK, don’t know where you are. Going on the mom in title, maybe the US? Will look into a TENs as well.
Thank you, Sue

Hi tlandes67
Thank you for your reply,
Will try acupuncture again, had it years ago, but didn’t seem to help. At the moment the only place in town has closed down.
Sue.

Hi SleeplessinLV,
Sorry you have had this for over 25 years, I wish there were a magic pill for all of us.Getting the docs to do anything at the moment (or any time) depends on what you have had done. Took ages to get one blood test and they found nothing, this was january, last one was the year before. I take multi vit tabs, and try to eat healthy meals. Being in the UK we have to wait and wait for tests and they don’t seem to think fibro is anything much. Not sure if I have tried the muscle relaxants, but everything from the doc made stomach worse so gave up. Far as I know medical marijuana is not available here except for certain things and fibro not one of them. If I can get some of it will definitely try it, I think I would try literally anything right now.
Thanks for your reply,
Sue.

Hi Carolyn,
Thanks for your reply, am so sorry that we all have this horrible painful thing and wish there was a magic pill we could use. Haven’t taken any narcotic, gave up on docs pills as they made my ‘touchy’ stomach worse. No pain docs here, so it’s ‘go it alone’ I think or wait till september to try to talk to someone on line. Have tried so many things and nothing works. Sweat lodge sounds good to me. I do stretches every day to try and stay moving. I will have to go through some of the ‘remedies’ on here and see if I can get some relief. I feel like screaming most days, might frighten hubby though Lol.
Take care,
Sue.

Have you tried Magnesium? It has to be magnesium malate, not just magnesium. It is hard to get in stores, I get mine online. I take 3 a day. Malate also found in apples—the sour ones have more of it, the malate is what makes them sour. If I could afford massages, they did help a lot. But I no longer have the money for such things. It’s important to move, walking is good–I can’t do that either, my back won’t let me take more than a few steps, and I was in such pain that my blood pressure would skyrocket. My dr. refused to give me any more tramadol because oif all the opiate scare going around—my blood pressure damaged my heart. I am now in Hospice, at home. Have been in it for a year, and they have more leeway with pain meds, so they first had me on tramadol, Morphine (both pill and liquid), and Ativan. My blood pressure went down without any additional BP meds. Eventually, they switched me over to Methadone. I was only on .25 mg twice a day but that gave me severe nightmares and nausea, I cut them in half with a pill cutter. That is considered a miniscule amount as I see where some people take about 65 gm a day!! The Dr is quite impressed that such a tiny amount helps me so much. I essentially take 1/8th of a .5 tablet 4 times a day. I’d rather take it more often at smaller amounts to keep me feeling better than 2 larger doses. I no longer take Tramadol, still occasionally a .5 dose of Liquid Morphine and Ativan now only when my heartrate has climbed up. They let me do what I want as long as it makes me feel better. I’ve lived 11 months longer than anyone expected anyway!! And not without a great deal of prayer! Without that, I know I would not be here at all!
Do try, if you can, the LDN. I do not know about the UK, here in USA it is not covered by insurance as it has to come from a compound pharmacy. You have to start at the lowest dose and slowly work up from there. It did work for me for a long time, then I no longer could afford it–it was $60 a month. Shame that only the rich are entitled to pain relief!!

Hi, SueT.
I’m so sorry about your pain. I also have fibro & IBS (and arthritis, degenerative discs & anxiety). The only way I can take my arthritis med (Mobic) is if I also take a Pepcid AC (generic) pill with it. You might ask your doctor if this would help. Any kind of NSAID drug is extremely hard on my stomach. And there is no way I will take oral steroids - only by injection, if necessary.
Stay safe & well (as well as possible!) and continue listening to your body.
If you need a friend, I’m here.

SueT,
No I live in the US. And we can get it here. I hope you can get it there.
Cathy

@tlandes67,
I wanted to say I’m very sorry about your cancer diagnosis. I pray that you will stay strong, find healing, and will benefit from joining this group of amazing people.

I have heard good things about acupuncture, but have never tried it.

Hi LMD,
Thanks for the reply, I’m working my way through some of the ideas in them. I wonder if my fibro is genetic as my mu m always had a bad back in later life and now my niece and also a nephew have been told they have it. I take multi vitamins that include vit 3 and magnesium and also have a magnesium spray and looking into getting a Tens as well. None of the docs I have spoken to are interested in anything ‘alternative’ no matter what and don’t mention ‘herbal’ they don’t recognice that either. I will keep going on things and hope we can all get good relief.
Sue.

Hi Ausie Mom,
I’m sorry that anyone has to go through all the pain with this horrible fibro. Along with fibro and IBS I also have arthritis, TMJD, dry eyes and mouth and a couple other annoyances as well. I find doctors are useless here (in UK) so am trying to sort myself out and getting a TENS to see if it will help.
Our son is in Australia he loves it, I do miss him though.
Sue.