Hi everyone, I have not been doing well. Some awful things have and still are occurring. No motivation to post anything. Crying every day. Lack of support. Not going to hurt myself but wish God would take me into His loving arms. Can’t write anymore. Starting to cry again. Prayers appreciated. Freedom
Dear Freedom I am glad you have reached out to the support group. I have prayed for you and will continue to do so. Really pleased that you are not going to hurt yourself or do anything silly. So often I have asked God to take me so I can understand what you are going through. But He will only do that at the right time for you to go to be with him. In the meantime just keep holding on to Him.
Hello Freedom it is Annette Moderator here please talk to me talking helps or why not have a wee chat with the great people on our crisis line who are more qualified and help when people are really suffering just hit where it says Crisis Line and then your appropriate country or I am always here we have spoken before lets chat again I am just out of the hospital so we can help each other…
Sorry you have been in hospital. Thinking about you and wishing you a speedy recovery.
Hello rosebud thank you this was my 7th time in the past year unfortunately it is the way things are going to be I am in chronic Tachycardia of my heart have had two small heart attacks and mini-stroke from it no bad effects from stroke thank the lord I know how dangerous his is being a retired nurse and I always tell the Doctors I want to be told the truth always I am lucky to have got to 81 and am so lucky my mind is still very active Hope you are not suffering and are well. Love Annette.
Thank you both for your kind words and support. I’m doing a little better? I have been in excruciating pain for several weeks. My doctor talked to me about trying Buprenorphine 2 mg for my pain. It’s not FDA approved for fibromyalgia but has shown success in recent clinical trials. An hour after I took it, I was super drugged. I vomited for 12 hours, had to crawl because I couldn’t walk and couldn’t see due to blurred vision. Also, I was completely out of it. I had to call the paramedics at 12a. I didn’t have ANYONE who could be with me. At the hospital, I was treated like an addict. The nurses were not nice and said hurtful things to me. I’ve had two friends tell me they can’t handle hearing about my fibromyalgia. That means even less support. I’ve been losing my balance but I haven’t fallen. My Fibro pain is unbearable. Thankfully I was able to see my rheumatologist Thursday and she referred me to a pain doctor and neurologist. She said I have severe fibromyalgia. My whole body, except my stomach, hurts. That’s all for now. More later. Annette, so sorry for all the hospitalizations. Do you have a pacemaker for your heart?
Wow, and I thought I was sensitive to chemical meds! ‘Luckily’ I got a focal seizure after taking an opioid (tilidine) so I could stop that $*!# immediately.
Did it at least help you that there was someone ‘looking after you’ in the hospital or did it just make it or make you feel worse?
Do you still have people who can hear you talk about health? Us, of course.
At least your rheum. has ideas. A neurologist’d check if anything else is going on. I hope the pain doc has other ideas than meds. They’re all very different, mine tried cupping, amitriptyline, tilidine and then applied to get me MMJ, which I’m still waiting for, but not following up on tho.
Maybe there’s someone professional who knows about fibro and can talk you through new steps or at least vent. I had to do all that stuff pretty much myself, but I do have some people to vent.
Yes, I do have a Pacemaker and they had it checked and said it still working but doing nothing for the Tachacardia they are talking of taking it out and putting in a Defribbulator. hope things are improving a bit for you.
Please do not be sad fibro is never as bad as we think we can help after all at the age of 81 I have been thru more then most. Try and post once more and tell us exactly what your problems are. Then together we can lead you down the path to feel better. I for instance also have an autoimmune disease and nkw have two titanium knees and two titanium shoukdwrs and 3 weeks ago have a Versilex Superion installed between my lumbar vertabrae L4 and L5 that took the pressure off the nerves in my kegs and lower back. I take hydrocodone as needed up to 120 pills/ month and have a73mcg fentanyl patch on my shoulder everything is available to you if you actually need it and know how to ensure the doctor you are a patient that will not misuse the pain killers. Does that interest you?
I too am so tired of all this pain and no support. I wish y’all were closer so we could support each other. I know we do here, but it’s not the same when we can be there physically to cry on each other’s shoulder. This Lyrica is killing me … slowly. But if I miss just one dose, I’m in agony. Just don’t know what to do anymore.
We are not there physically, Stacrj03, but God is there and will hold you in his arms. I am praying special comfort for you. This fibro pain does terrible things to us mentally, as well as physically.
Have you spoken to your doctor about trying a different med? By “killing you” what do you mean? Lyrica is helping with the pain but hurting you in other ways? Sorry, I just need to understand. I’m on several meds and have been for years. I don’t think I could function without them, most days…
Hang in there!
Freedom, I’m so glad you are being sent to a pain management doctor. They may be able to give you injections (either steroid or nerve blocks) that can help with your pain. Hang in there, girl, and don’t lose hope!!!
Thank you for your kind words. lyrica … Where can I begin? I guess the main side effect is the constant thirst I feel like I’m drowning sometimes because I drink so much water and anything I can get my hands on I’m constantly thirsty. Because of the dry throat and mouth all the time my teeth are crumbling. I can’t sleep I’m literally up every two hours I’m lucky if I get four hours a night.I have trouble Concentrating and it’s affecting my work. My memory it’s horrible. The depression gets out of control sometimes I have no ambition to go anywhere or do anything. I’m losing my friends my family is becoming distant. I live alone. I am alone.
Hi - I can imagine, often similar for me, tho not as extreme. Amitriptyline made it worse, glad I’m off of it (7 other reasons too). Got a dry cough from it at night, too. Soy milk quenches my thirst more than pure water and prevents losing so much liquid again. Drinking more doesn’t make a difference to my thirst & my nephrologist says it’s OK to keep it down to about 2 pints a day, esp. seeing as I eat a lot of raw veg and yogurts. My dentist recommended GC dry mouth gel, don’t know if you know that. Doesn’t help me much, but a bit.
Wow, you can work after four hours of sleep a night, do I understand that right? I cdn’t concentrate or remember much at all either… But my pain rockets if I go under 9h for more than 1 or 2 nights My sleep amount is soaring at the moment (13h tonight, not too much of it dozed, plus 1h awake), esp. now I’m trying CBD oil, dunno where it’s gonna end, how I’m gonna manage to work or do anything much if I need to go back up to an average of 10-11h. I’m up every 1 or 1.5h without CBD oil, that’s gone up to 2-3h a stint now, which is nice. The long sleep tonight has got a slight depressive touch down again a bit more.
Stacrj03, bless your heart!!! You need to make a list of these symptoms and side effects and get to a doctor who will really help you! I’m saying prayers. Please hang in there. I think sometimes our family becomes immune to us b/c they constantly hear that we are always sick with something. It is sad, but true. The folks on this site really get it. They know what this “invisible to others” illness is doing. Hang in there!!!
Freedom, I’m so sorry that you’ve been feeling so down recently. It’s especially challenging when you’re as sensitive to drugs as you are. That was one bad reaction you had to buprenorphine! And (as it usually does) one bad thing tends to compound into more. It must really gall you to have nurses – your former colleagues – treat you like you are drug seeking. Ugh, no words. Or words we don’t tolerate here.
Could the isolation of the pandemic play a part in how you are feeling? I’m OK, but not as upbeat as I usually am, and several of my friends are feeling the same way. Not that knowing the reason makes things better, but it will perhaps give you a glimmer of optimism.
You know that we have the Crisis Help Line tab in the top right quadrant, don’t you? If you get really down to the point of thinking about suicide, it’s there for you. And we all hope you know that we value your friendship and company here. Look at the responses on this thread! That’s what Ben’s Friends is all about.
Up in Illinois where you are, at what stage is spring? The snow is gone from the Canadian hinterland, but things are still looking pretty brown. Oh, I had some crocusses pop up on the south side, near the porch. That cheered me up a bit. Until they got dug up by the ***** squirrels!
Hang in there, and hang out here with us!
Hi everyone, thank you sooooooooooo much for all your support. And I’m glad to see some new names reaching out for support too. Never in a million years did I think my life would drastically change overnight. I hear people saying that they have had Fibro for 20, 30, 40 years. I can’t imagine living like this for that many years. Things I need ideas, suggestions about are: 1) I have great difficulty making healthy food so I eat cereal or order fast food to be delivered. I have gained a lot of weight and I’m on a limited income. 2) I get exhausted quickly so doing my laundry is awful. 3) Little support and I live alone. 4) Pain and fatigue. It’s like there’s a light flashing in my head that reads pain, pain, pain, pain, pain… My whole body hurts. All my joints and muscles hurt. Every step I take hurts. It keeps me awake. I feel like cutting my arms and legs off sometimes. Oh, making a large quantity of food and freezing it doesn’t work well because it hurts my body and I get tired quickly. I have thrown away so many fresh fruits and vegetables that have gone bad. Has anyone tried low dose Naltrexone? My rheumatologist is sending me to this pain specialist that uses LDN. Oh, one good thing. I got my first COVID vaccine today. I brought my little fur baby to the vet today. He has an ear infection in his left ear. I have antibiotic ear drops for him so he should be feeling better soon. I wish I could give each and every one of you a big hug. . You are all blessings to my heart.
Wow, impressive how clearly you’re reaching out!
I’m sure others can do the job better for you, but I’ve tried to check where you’re coming from and here are my first ideas/suggestions, if you can take any of them:
1… First & foremost eat your fresh fruit & veg raw. 3 pieces of it, before you eat anything else. As a salad takes a bit off effort or just wash it and eat is like it is. Better for your health, weight, fibro, time, effort, pain, purse, trash, everything really. Then before you eat anything else, yoghurt with little or no added sugar. If you need something cooked - healthiest is beans in a jar or can, various types, white, “baked”, red or green. That’s faster food than fast food - no preparing, cooking or baking, just heating up. Even more so if you can manage to omit meat (or keep more to oily fish for lots of omega 3).
Now comes the health nut bit, which you’ve probably all heard before but not really considered properly: “No” sugar (under 12% in products like yoghurt), “no” alcohol, “no” coffeine, wholemeal cereals or less, canola for oil, legumes like peanuts and soy, if possible part: nuts, esp. walnuts, pumpkin seeds, extremely healthy, nourish and keep time & energy down. Guidelines: More unsaturated fats (omega 3) than saturated, more veg than fruits, more complex carbs than simple carbs like sugar.
2) Break down & find hacks for the laundry and all housework really. Very hard for my arms too, and we have no tumble drier. I do it all in stints, with breaks, often task-switching. No pegging, no ironing (just stroking). Not stopping when it hurts, stopping before it hurts.
3) Anyone you know worth trying to explain in detail what this is all about?
4) Hard to know where to start if it’s very general. I know you’ve been unsuccessful with meds, like me. So maybe these questions can help you or at least us to think up ideas: When is the pain less? When does it build up? Can you describe it in more detail? On the meme-thread you described what I’d call an Ache all over, is that the main problem? Do you have single sharp pains in certain places as well? Is pacing not working? Have you tried CBT? Any kind of physical therapy?
5) Hope you can take the shot well! My wife needed 10 days to recover completely from the nausea, altho she’s healthy…
6) I’ve seen LDN recommended by some, but I’m not at all convinced, esp. by the side effects. This is one of many sites plugging it, some people talk of ‘miraculous’ improvement, others are just as disappointed:
Here is some information
Hello JayCS! You have a plethora of knowledge and information ! I never really thought to eat the vegetables raw. It’s not that I’ve never done this before. But usually raw vegetables are served on a tray with dip at parties and events. I’m going to the grocery store tomorrow to buy maybe two different fruits and vegetables. Just going to keep food simple. I already have yogurt in the refrigerator and it doesn’t have sugar. My pain…throbbing joint pain from neck down to toes. Muscle pain, throbbing, burning, tingling of arms, wrists, hands, legs along with the feeling of thousands of tiny knives piercing my arms to fingers and legs to toes. Random sharp shooting pain like electrical shocks. Burning sensation on top of hands and feet. Back pain- aching. Neck pain- aching. Occasional costochondritis. Basically my whole body hurts 27/7. At least 3 times a week I experience all the above symptoms at the same time. On a good day, my pain is a 4(0-10). My newest symptom is stiffness in my hands and my quads feel like the muscles are tearing apart. I also have FATIGUE. I can’t walk very long. I look like I’m drunk when walking. Oh, and I have balance issues these past three months. I don’t have rheumatoid arthritis or multiple sclerosis or anything inflammatory. I don’t have any autoimmune disorders. Thank you for the articles about LDN. They were interesting and helpful. I’m doing a little better mentally and not feeling quite as hopeless. The weather is getting warmer and the leaves and starting to grow. The grass is green and the summer birds are back from the south. Does anyone know how gramybear is doing? Hugs to everyone on this site!
Hi Freedom - good to hear you’re getting up and seeing more ‘green’ / hope in the world.
Talking about green(s)… I like the raw fruit & veg visible. My wife has given up putting it somewhere really cool, so that it lasts longer, because: When I see it, it entices me to eat it and I also see what needs eating first. In the small ‘front hall’ next to the kitchen we have a small table, where I have dishes or open plastic-containers with 1-2 chicory (endive), 4-5 carrots, 1-2 avocadoes, 1 zucchini, 1 cucumber, 1 celery/Chinese cabbage, 4-5 apples. Some of this for Harley & Stuey, who also love fennel & kohlrabi/Cabbage turnip, but they of course are just as veggie-fans as I am/have to be.
Since you like me have mainly fibro contributing to the pain and fatigue (despite in my case 30 diagnoses), and I also had this continual pain all over the place and often everywhere, perhaps I can think of things where to start to get some pains down. One big problem of course is doing something without making it or anything else (too much) worse…
The thing that now helps me most for these pains is my short twist-stretching the concerned limbs/parts. But I’m not sure if it’d been possible a year ago. But even worse then were the recommended long stretches & exercises which often made me nauseous & cramp. So might be worth trying. That (at least in my case) helps joint (which are my tendons), muscle, back, neck and rib pain, which you are mentioning and are also amongst my main pains.
Sometimes twist-stretching helps with burning, tingling, piercing & shooting pains too, sometimes I can pressure it away (like stabbing pains in fingers & toes) and sometimes I just have to wait and detach or distract myself mentally…
The other thing for me, for all these types, is arnica complex cream (‘Traumeel’, a bit homeopathic, a bit herbal, not sure how far you’re into that), but not rubbing too long or hard, otherwise my elbows and wrists hurt more, or I have to rub them too.
Not sure about trying heat or cold, perhaps just quick under the tap, not too long?
Others’d suggest nerve supps like Magnesium & B-Vitamins, but they’re expensive, unproven and for me they were unhelpful.
Is gentle osteopathy or chiropractic or similar an option?
Walking btw is still an issue for me too, despite all my progress. Apart from cycling instead, which won’t be an option for you, or keeping it short, I put my legs up against a wall before and after (and sometimes in between on a bench, to be honest)…
Anything here that helps?