Nothing is helping

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Having a terrible year.
Every single day i’m in 8/10 pain while i’m just lying in bed. Dark thoughts come to haunt me every few hours.
I started taking LDN, Gabapentin, and Cymbalta a few months ago as my new pain specialist has advised. No bad reactions, but nothing is improving.
I’m 25. I’ve had this for 10 years. It took away my prime years. I’ve never been able to aquire myself a degree. I’ve never worked even a part-time job. I grieve every day for the person I used to be. Sports and exercise were my getaway.
I’m scared to continue my life because I don’t want to bring children into a world of pain and illness. I also don’t know where my breaking point is, but I feel it’s not so far away from where I am now.
My husband is the only reason I keep on going, he has been for 7 years. Sometimes I feel like I should’ve let him go, so I could let myself go.
I don’t know how to help myself.
I have these thoughts daily.
I don’t remember the last day I wasn’t in tears.
I wish I could be numb, this pain is unbearable.
Am I dying? Because this does not feel like life.
Yet i still continue every day.

I won’t do anything stupid despite the constant thoughts, I just needed to rant and get all of this off my chest.
I hope this year has been kinder to everyone else <3

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Rosellas,
I am just so sorry that you are in this degree of pain and that it has gone on so long. Medications haven’t helped me either so I can’t recommend anything in that area. There are two resources that have been somewhat helpful to me though, and I’ll mention them even though and these might not mean a thing to you.
The first is Jon Kabat Zinn’s CD called ‘Mindfulness for Pain Relief’. Zinn has worked for many years with people who have chronic pain from injuries or illnesses.
The other resource is a book called ‘How to Be Sick’, by Toni Bernhard. Toni has lived with severe illness for twenty years now and manages to have a rewarding life despite being bedridden.
I hope you find what you need.

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I’m really sorry that you’re feeling this way. I really don’t know what to say so I’ll just get to the point. Only two things have proven to help my pain, acupuncture and marijuana. I don’t know how it works but acupuncture has “loosened up” many of my trigger points. It’s important to find a practitioner that uses an electric stimulator on the needles. And marijuana is the only effective muscle relaxer I’ve ever had. I don’t like the sensation of being high but I’ll smoke when my pain is bad and it helps immediately. I found a vape pen that’s half THC half CBD, it gives mild pain relief without being intoxicated.

Honestly my life isn’t great. But I do feel better than I did years ago. Small victories give me hope. A little less pain in one spot, a little more flexibility in another. Don’t just rely on conventional medicine. Keep searching, keep trying, don’t give up.

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My dear Rosellas, I wish I was sitting right next to you, with my arm around your shoulders. Where to start. Mmmmmm. I am very familiar with childhood trauma that lasted well into adulthood. That alone is awful to deal with. Add fibromyalgia to the mixture and …huh!!! I had Mononucleosis when I was 4 or 5. I looked up the type of fever you had, and I believe they are the same thing. I spend a lot of time laying on the couch or in bed. I even started to wear away the fabric , on the couch, where my head rests. Now I put a towel there to prevent it from getting worse. I have come close to taking my own life due to fibromyalgia. I won’t do it. But the psychological pain mixed with fibromyalgia symptoms is horrible. I told someone once that I was sad and depressed and desperate. He didn’t minimize my anguish. He described what I was, and am going through as suffering. He said we can tolerate a broken arm, a sore throat or even the loss of an arm or leg. But we don’t want to suffer. Do you have a trusted rheumatologist, neurologist or doctor? Have you, within the past 12 months, been tested for other things besides fibromyalgia? I just tested positive for an autoimmune disorder and possible rare neurological disorder. I’m also on LDN. It has helped some. I started on 1.0 mg. Now I’m up to 3.5mg. The highest dose for LDN is 4.5mg per my pain doctor. He said if I don’t have any improvement at that dose, I never will. He said 50% of fibromyalgia patients have improvement with LDN. When you are laying in bed with this awful pain, are you able to do anything? Are you able to listen to music, watch TV or talk on the phone. Is there one thing that helps you just a little bit? Do you have a dog or cat that will snuggle up next to you? My dog Max has been a lifesaver. He loves me on good day and bad days. I care. :hugs: Freedom

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Are you sure your diagnosis is correct… i guess that was the first thing that came to mind?

Learn self help in baby steps… oddly i get help from antiinflamatories… even supplement ones… i take low dose tramadol… as i am very sensitive to side effects… i almost child dose… so that just keeps the edge off the pain… so iuse self help items, like an acupressure pad, microcurrent unit, the trigger point handbook…this book teaches you to relieve those tight knotted areas…

Do you spend most the day in bed? Are you weak ?

With fibro patients we need to move…even if it hurts…but i read somewhere that if you are gonna move more, it should be done in extremely small increments , like a minute or a few…

I also use topical pain relievers for areas that are more intense…some of the good ones are disappearing from the marketplace though…pain erase was awesome…soothenol was intense but super helped my low back pain…a lot of people could not get past its intensity…but for that kind of pain relief , i sure did…

I always studied the alternative drs for ways to help myself.

You can do this…email me if you need ideas…

When i am in a bad flare i do take some time out and rest,
Sounds like you are staying in a flare… but most do not…

Set small goals and increase your activity some way…

Use heat and topicals, but not at the same time

Study trigger points, that book is written almost for the professionals , but you can look up an area of pain and go to that section…

You are young and you cannot give into it…mine got worse when i my kids were little…but that just made me fight for answers so i could be there for them…

Honestly , the things i take medically , help me maybe 50 per cent, slf help helps another 50… i weeded one afternoon this week…and had to rest the next day… but hey i got it done and ihave to push , because we lose strength so fast…

I do it, even knowing i will pay for it, our muscles pay us back :woman_shrugging:t2:

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Oh, my dear. I want you to know… I HEAR you. I feel you and I see you. I’m not going to tell you WHAT to do differently, but I am praying for you. For relief, for courage, for a way to make sense of your life as a person with a chronic condition. You’ve made a bold decision by coming here, being with your tribe, and getting it off your chest. We’re here to listen and let you know YOU ARE NOT ALONE.
With love and healing intentions,
Kelly

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Hi Chucky, I found marijuana helped me a lot. I didn’t use it every day but my Dr. at Kaiser said I can’t use it with my Tramadol. I weaned myself down to 1 tramadol pill per day. I just couldn’t go any lower than that. She knows I use marijuana because Kaiser makes me take a urine test every 6 months to make sure I’m “not selling the tramadol”. It’s so ridiculous I have been on
tram for at least 11 years (my rheumotologist gave it to me] and never became an addict. So tired of the pain and doctors

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Thank you for your support and suggestions. I’m a bit scared of acupuncture due to fear and sensitivities to needles, however I am most definitely considering CBD oil. Its extremely hard to get in Aus though and out of my price range. Hopefully one day I can get some help to be able to try it.
I have smoked and done edibles (with THC), but not for long and in super small quantities, so it didnt make much of a difference.
I’m super happy you’ve found some things that help you even if it is just mild relief.
I think of giving up every day… but I wont.
Thank you again :two_hearts:

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Thank you for your kind words… it would be nice having someone who truly understands right beside me to talk to and support each other.
I have had a whole heap of tests done this year but I dont think any were for things other than the norm.
My LDN dose is at 2.5, and I’m working my way up slowly to the 4.5 mark. I’m working with a pain specialist, gp, and exercise physio at the moment. My pain specialist recommended Ketamine infusion as soon as she met me. Too high pain for too long she said. But of course I have to wait until mid next year for insurance to kick in. I am counting down the months even though I know that may not work either.
I do watch TV most days, and when I can, pick up my cross stitch. My wonderful kitten is attached to me at the hip so I always have company. Companion animals are so so important in my eyes, shes gotten me through some truly difficult times.

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Thank you… it means a lot :two_hearts: I’m not here often, but its comforting knowing theres a safe space with people like me, who care x

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We do care, we have all been at the lows with this…some have slogged their way to better healthj

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I agree with EVERYONE ! I’ve had fibro for 45 years. my first appointment with a rheumy, he said there is a new diagnosis out, and you have it. its called fibromyalgia. There’s been no progress made since that day. I gained 19 pounds in 10 days on lyrica and it took 6 months to get the weight off. i am highly allergic to gabapentin, sulfa,
cymbalta, savella. etc. I’m 78 now and alone except for my cat. yep, she is my safe person on bad days. I also can do gardening or physical things knowing i will pay the price. my parents, siblings and oldest daughter are all dead.
my 50 year old daughter is married, works with boys between foster care and prison, and lives 2 hours from me, so yes, i have some days i think WHY keep going. The answer is not for myself, but for my daughter who would be devestated. AND, who would find and take care of my cat?? So i try to make the best of things. I was on the LDN and got totally off Norco. But i felt even worse and eventually the pain specialist just threw up his hands and started me back on Norco.
I do notice that when I have an appointment with my car mechanic, or a doctor, or need to drive the 20 miles for groceries, when I put on a bit of makeup and comb my hair, I have a pretty good day. I think covid shutting us in all the time adds to our depresion. Its been a long time since i checked in here, and I guess the bottom line is I am no better or worse than the last time I was here. Being lonely makes it SEEM worse, but I’m not sure it is. Try to move around as much as possible, walk to the bedroom and back 5 times if you cant get outside. Muscle movement is essential. Luv to all.

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Carolyn, thanks for summarizing & letting us listen to your story!
In my overview of LDN reactions here, I wrote that you were one of many here with bad reactions to it, that’s right, isn’t it?

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Just an update for those of you interested or concerned. I am now coming off of cymbalta and gabapentin. I trialled CBD and THC with slight success with the very high doses (I can’t continue due to costs).
LDN has been great for keeping me awake but it doesn’t do anything for the pain.
These last few months I’ve been trying to contact my specialist for pain relief over Christmas, and she finally spoke to me today. Tomorrow I will obtain a panadiene forte script so that I can actually function and maybe get some sleep.
Next year we will review other opioids but also trial anti-inflammertries and ketamine. I know opioids aren’t a great option but I feel I’m scraping the bottom of the barrel.
Happy holidays and may you all be able to enjoy these next few weeks!

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Hi Rosellas, So, so sorry that you’re in so much pain. I’m taking LDN. It has helped but not as much as I thought it would. Currently, I take 4.0 mg a day. My pain specialist says that the highest effective dose is 4.5 mg. He said about 50% of people respond favorably to LDN. I plan on continuing to take it. But it seems like every day I have a flare that can last hours to days. My doctor said that a person can still have flares with LDN. It’s hard when you cannot escape the pain. It follows you everywhere and never goes away. I’ve heard Ketamine is helpful for depression. I wish you abundant peace in 2022. :hugs:

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Hi Freedom, good to hear from you again. I think 50% of fibromites being helped is just a very rough number. But I know that while almost all studies were done with exactly 4.5mg, which was chosen by the doc that first came up with the idea, that I’ve heard of people faring well with 2x4.5mg=9mg and others needing far less than 4.5. However this Danish study from 2020 Low-Dose Naltrexone for the Treatment of Fibromyalgia: Investigation of Dose-Response Relationships - PubMed has tested doses and found 4.5 a pretty good estimate. Because all trials have been tiny up to now, the same Danes are at the moment doing a better trial they have described here Low-dose naltrexone for the treatment of fibromyalgia: protocol for a double-blind, randomized, placebo-controlled trial - PubMed - be interesting to see the results. I’m happy that someone in Europe is doing them, because it’s hard to get here, as LDN’s not at all well known.

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That’s really interesting JayCS. I can’t remember, have you tried LDN?

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Hun, im so sorry, i can so relate to what your saying… im excited when i get new pjs, cuz im in bed most everyday, like you im a solid 8 of 10 daily and have been for years now. I dont write here because i just dont remember too, or I just dont want to say something I will regret later, like complaining… i do my absolute best to keep joy in my heart and its hard when the pain is spiking… Im a Christian and I decided when I was diagnosed with Lupus,( after 7 yrs of Fibromyalgia and Degenerative disc disease, ive dealt with migraines, constant infections, hypothyroidism, and arthritis… its a lot. But The Lord is who gives me strength to go on for my family. If you ever need a friend please dont hesitate to contact me, and we can exchange numbers. I feel it helps to talk to someone who understands. Becsuse even the people who see us suffer dont fully comprehend it and can become numb to it, so to speak. Ive been sick 16yrs, and i lost very valuable years that i can never get back, but I can choose to make the best of the ones im dealt, even if they are spent in tears from constant pain. Sending love and hugs to you sweets, and will be praying for you
Pamela

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Hi - I have not posted for a LONG LONG time. I wish I could help you, but the past few months, absolutely nothing helps. The doctor gave me a prescription for massage so insurance would help pay. It felt SO wonderful while I was receiving the massage, but by evening i hurt even worse than before. I have the same results with water therapy…
I have hallucinations with savella and cymbalta, tremors with gabapentin, weight gain with lyrica. morphine is like eating M&M candy. The one thing that did help was cortisone…pills and/or shots but that stopped as it gave me osteoporosis. I do tolerate Norco and that helps sometimes but not always. Having chronic pain and dark thoughts takes a lot of energy that we dont have in order to actually get up, comb our hair, eat something healthy. I too have a cat companion. I try to walk or sit outside when the weather is decent. I realize this looks like a long list of complaints, but I meant for it to remind you so many of us feel the very same as you do. It solves nothing to know others suffer, and yet it relieves a little bit of loneliness. I wish a good day for you tomorrow and hugs for tonight.

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Whoopsie, that question eluded me! No I haven’t, but as severe as my fatigue has become I’m trying to get it now, and have found one of my docs will prescribe it. And all pharmacies here would do it, there’s just a supply difficulty getting the pure naltrexone “at the moment”. I’ve still had to research myself what exactly I want put on my prescription (see my blog), cos neither my doc nor my pharmacies know that.
Added to the Danish studies mentioned above there is now also a Spanish/worldwide “INNOVA” study starting 2022: Study protocol for a randomised, double-blinded, placebo-controlled phase III trial examining the add-on efficacy, cost-utility and neurobiological effects of low-dose naltrexone (LDN) in patients with fibromyalgia (INNOVA study).
Reading that I can see my problem is that they’re mainly measuring pain, whilst my main remaining problem is overbearing lack of energy. But they are also checking fatigue and sleep. I think my results will be out before their’s are… :sunglasses: