I'm fighting a losing battle

Hi everybody. I'm finding it very hard to cope. I started experiencing symptoms when I was 20. I had to keep pursuing my dr ro look deeper into my pain because at 20 years old I shouldn't be in more pain then more 60+ old coworkers. it was finally confirmed when I was 21 and now at almost 24 my symptoms have worsened and multiplied. And it is now effecting my work. my boss is threatening to fire me because when I started working there I didnt have it documented. so he can claim ignorance. I looked at the list of common symptoms that was posted here before and have 39/50 of them. I'm also struggling with the social implications it has had on me. I find it hard to make friends because I cant do the things they do. I cant drink, be up all night. it's hard to watch them do this stuff and I cant do. I've lost my motivation to shower and clean my house. I also lose my appetite. How do I help my dr understand that my meds arent helping and I've got more symptoms and that I need to get this under control so I can make a living? I are there others who are young as me? How are you coping? Are then any medications I should look into? I'm starting to drown in my feelings and disappointment.

Thanks for the welcome. My GP put me on amitriptylin(25mg) because my migraines were getting worse and he said that it might also help manage the pain. it's hard to remember exactly what type of specialist I saw but I had to wait 6 months to see him. I remember for sure that the clinic said osteopathy but not much else.I told him my symptoms and the levels of pain I was experiencing. At the beginning I was taking 16(4 doses of 4)regular strength aleve a day! With the amitriptylin I was able to cut back to 8 aleve a day. after about a year of aleve I switched to extra strength tylenol. Tylenol started at 1 dose of 2 then 2 doses when I thought it was going to go to 3 doses a day i started taking 3 at a time and amitriptylin went to 50mg a day. I take 3 500mg tylenol on a good day and up to 6 on a bad day. I'm bad at remembering vitamins because that is the opposite time I take the rest of my meds. Anyway back to the dr. he told me that I was just going to have to deal with the pain and hope it goes away. I was absolutely devastated when he said that.

Ive have fibro for 32 years. For many of those years I took 3 ibuprofen with food four times a day (2 didn’t touch the pain) and 2 extra strength Tylenol four times a day...every six hour around the clock. I took both at the same time. The pain would wake me 4-5 times a night. Then I learned about Vitamin D3. I live in sunny Florida but I was still very deficient because I use sun screen when outside. I started taking D3 and more pain dropped off! I take 5,500 IU of Vitamin D3 a day. That includes my supplement, what is in my daily multiple vitamin, and also my calcium tablets.

This worked for years but then I DID start getting worse. That’s when I saw my rheumatologist and was diagnosed with ankylosing spondylitis. I blamed all my back pain on fibro but AS was causing a lot of it. This is when I was put on Robaxin...about six years ago...and it made a huge difference in my overall pain. This in turn relieved my stress and that helped with other symptoms. I am now taking the ibuprofen and Tylenol only twice a day...morning and evening. I also take my vitamins at the same time.

We get so anxious about what is going on in our bodies and our bodies react to that stress. Do try to relax. Get the sleep you need too. That will help with the fog and cognitive memory problems. When I’m very fatigued I’m lucky if I know my own name.

Do gentle exercises daily...things like walking, yoga, swimming. Also, stretching exercises help. There is a list in Fibro 101. And pace yourself when doing things.

I hope this information will help you. Take one day at a time. Don’t project yourself in the future because no one knows the future. Don’t do a body check either. Just enjoy your day and focus on other things and that helps also. I’m a positive thinker and this has helped me immensely. There is a link in Fibro 101 about how to have a positive attitude when you have chronic pain. Check that out also.

Sherrine

Don’t give in. You will beat this! I would be looking for another job...maybe something with less walking and definitely less pressure.

You mention allergies. I have a friend who saw an allergist and was tested to see what she was allergic to...if anything. Her doctor sent her because she has had complex migraines for 60 years! Well, it turned out she was allergic to certain foods, along with the typical grasses and trees. She has eliminated the foods from her diet and has had no more migraines! You might check into that too.

But I’d look for another job if I were you. The stress this boss is causing could be causing some of your symptoms.

Sherrine

Thank you, Craveslaughter! I never heard of that app. It wouldn’t work for me because I am extremely hearing impaired but it could help others here. I just take my supplements when I take my medications...twice a day...and the supplements work fine for me this way. I don’t want to think about pills all day long.

Sherrine

Hi and welcome to the fibro forum, Bardot! You have already read some great ideas here, and I have little to add, except a few things. (update: looks like a few more than I thought, LOL!).

I dislike taking meds and avoid them when I can. My doctor has given me permission to take my meds as needed---something one should absolutely discuss with their doctor to see if it's okay.

I take Neurontin (gabapentin) for nerve-related pain or issues (tingling, etc.) and I requested it in 100 mg capsules, rather than the 300 mg capsules I started with. To me, the less meds, the better, but if I'm having issues and need something, a small amount can help. I recently read some not-so-positive things about taking Neurontin, but all in all, it's important both to research your meds and also discuss the pros and cons with your doctor to get the full picture. Bring up any concerns you have.

I also take Flexeril (cyclobenzaprine) as needed, and it helps stiffness but makes me extremely sleepy! I sometimes take only half a tablet or even slightly less, but it makes a difference.

I LOVE my heating pad and microwavable "bed buddies"--my favorite ways to cope with fibro pain. More for at-home use, though, of course.

Meds can cause dry mouth which can lead to cavities I learned! I use Wal-Mart's Dry Mouth Oral Rinse especially at night, and it seems to help. I also brush/floss frequently, and drink a lot of water.

Showering and hygiene can be difficult if you're not feeling well. I sometimes use a small basin and take a "bird bath" if my feet are bothering me. I then soak my feet later and wash my hair, leaning over the bathtub and filling a basin with water to rinse. But I do make sure I get one really "good" shower/bath at least once a week.

I've found stress can make pain worse, so I try to avoid it, if possible (not always easy in this world!). It's good to have pets, hobbies, watch funny movies, listen to relaxing or other favorite music, etc. and get some good 'down' time when possible. I work for a while, then sit and do something sitting down.

I don't work outside the home, but have the deepest admiration for those with fibro who do--how do they do that?? But everyone's situation is different and sometimes more demands are on people. Would it be possible for you to do some kind of work from home? Or could you talk to the 'powers that be'' at work about getting some sort of help (sitting or whatever) when you need to? I'm sorry you are under stress there, and as Sherrine said, maybe it's time to look for other work.

Alternating sitting/standing work works well for me at home. Also, following a fairly regular but not rigid schedule. I write in a notebook what I hope to accomplish and cross off when I'm done. I also use sticky notes to remind me of things and even stick them on my purse sometimes or on the door as I'm going out. Can't miss them there!

Could your loss of appetite be from the stress you're feeling? Maybe it's something else you could talk over with your doctor.

It can be tricky to navigate friendships when you have fibro. I have some friends/relatives who generally understand and others who don't get it at all! (Incidentally, my sweet son and D-I-L even bought me gluten-free foods when we went to their place for Christmas dinner. Some people are awesome about understanding, and maybe some just need to be told about fibro).
But all we can do is explain the situation. Have you checked into any fibro support groups in your area, or maybe your church has some kind of group you could join. It would be another place to meet people.

Well, I've said enough! One last thing: This forum is awesome! If you do a search on any fibro-related topic (search box at top of page), you'll find all kinds of helpful info.

I hope things improve soon. Please keep us posted, and best wishes!

I’m glad you made the effort to see your doctor. The medication given to you is the generic form of Cymbalta...an anti-depressant that has helped some fibro patients. It’s a start and it might really help you. Other medications doctors choose for fibro are Lyrica and Savella. All three have had some success and some failure. What works for one with fibro doesn’t necessarily work for another.

I wouldn’t use the Keto diet if I were you. On this, you limit your carbohydrates to no more than 50 carbs a day. It’s about a 500 calorie diet I believe. Meat and cheese have almost no carbs so you tend to zero in on them but they are very high in fats and saturated fats which is bad for your heart and circulatory system. This is a fad diet.

If you don’t need to lose weight then don’t get on this. If you do need to lose weight you can cut back on your carbs but not that much. I lost 85 pounds doing this. I only ate around 100 carbs a day and I ate foods from all food groups. This in turn became a way of eating for me so I haven’t gained weight back in ten years. And I didn’t notice any difference in my pain levels in cutting back on the carbs either.

Give the Cymbalta a chance and it might really help you. I do hope so.

Sherrine

Wayup, I tend to believe the Mayo Clinic when it comes to hyperparathyroidism. Your stating that it’s not true that the level of calcium increases the intensity of symptoms in hyperparathyroidism is wrong..,according to the Mayo Clinic.

https://www.mayoclinic.org/diseases-conditions/hyperparathyroidism/symptoms-causes/syc-20356194

Sherrine

I didnt want my post to be too long, in accordance with forum rules, but the center does address symptom severity and calcium levels on their site, which I linked to above.

You have not read far enough at the site.

Hi guys i got an update. I got my mri on wednesday. they found cysts in my brain. my dr is finding me a neurologist. she said tht if i dont get an appointment call by next friday to call her because she doesn't want me "being lost in the pile". I am up and down in my emotions because im not really sure how to feel. My aunt said there is a family history of brain problems.

Well I certainly didn't see that coming. You probably didn't either. I would expect since sleep was helping you that one of these other cubicles was where you would fit. But I guess better sleep helps most everybody!

You hang tough. Remember that You have already proven to yourself that you are made of hardened steel. (even when it does not feel true, it is! You have been working at a job!) I'm glad you and your doctor have been continuing to work on figuring out the puzzle.

Yeah. She specifically said cysts