Newbie here….I’m so bad with this

[BarelyHere]

Hi All. Been watching but finally joined. Sorry for my long post. I’m 71 and so bad with fibro I feel like I haven’t had a life for years and getting worse every year. I think it first started around 48 ( 23 years ago) when I was very stressed, getting a divorce and also had a major operation that year, all which I know can trigger fibro. It started with aching many days, then I noticed I had to left my legs with my hands to get them out of my low car. I got worse every year since , sometimes the flares were short then they got longer and longer. Now my flare starts end of winter till beginning of next, perfectly coinciding with the seasonal allergies I have that are really bad. Tree season is my worst and people don’t realize it starts in feb/ March. I always hurt, but I’ll wake up really ridiculously bad and I look at the pollen count and it’s started, whereas before that, it showed no pollen. So I know my allergies are my trigger, as is eating too much sugar etc, the usual things. I was treated over 20 years for severe inhalant allergies, gett8ng shots etc, but got so bad the docs told me they couldn’t help me anymore and I should just stop the shots and stick with meds for symptoms ( meds barely touch the surface) . I’ve been diagnosed years ago with fibro, by 3 different rheumatologists, including one who specialized in fibro. I can’t take meds like lyrica cause I don’t do well with certain classes of meds. i did try neurontin and it really helped, but made me so jumpy and hyper I couldn’t continue ( I’m super sensitive to meds). I also, once, was given steroids in the hospital when I had to go to the ER for asthma, and it took away all my fibro symptoms and I felt like a new different person, like my young self. But after I weaned off it, I went back to the same. I recently did a lot of research on low dose prednisone for fibro and am about to try that. I’m not too worried about very long term side effects, as it’s a very low dose and I’m already 71, if I can feel better now, I’m going for it. I’ve tried to reduce my stress, and have, but it’s also so stressful on a daily basis to feel so awful and have so many weird symptoms. if I have to go anywhere, like an appointment etc, I have to get up 3 hrs before as that’s how long it takes me to even be able to function physically. When I have annual checkups, everything always looks fine and my doc says I’m in amazingly good health for 71 and also for the fact that I have COPD/ emphysema. My COPD story is weird. I smoked over 50 years and I feel I probably should be dead now from it but I have no lung cancer thank god. I had COPD though and had nothing except seasonal asthma ( went to pulmonogist and had all tests and cat scans) before I lived in 2 places, for 4 years, where people smoked pot ( which I’m really allergic to). It would come into my apt and id cough my head off, then when I complained they still did it but covered the smell with tons of scented candles and plug ins, which made me cough more and get more sick. Suddenly 4 years later, I had “ scarred” lungs on cat scans. I finally had to BuY a house to get away from other people. With it I developed “ eosenephil asthma” where white blood cells attack and swell up your lungs and esophagus tissues to “ protect them”. When my fibro is good ( which isn’t often) I’m fine, when my allergies and fibro gets really bad, everything swells up including my lungs and throat. I feel every day like I’m dying and always wonder if I’ll reach another birthday. Does anyone else feel like that? I actually put all my affairs in order just in case. It’s an awful mental state to live in. I’m depressed on a low level all the time. I do occasionally have a good day..,it doesn’t seem to follow any pattern. It can change on a dime and I’ll stop hurting, breathe fine etc and it’s like I’m reborn. On those Days my mental mood gets great, I accomplish all the tasks I couldn’t before and I feel wow I can’t be dying or I wouldn’t feel this good today, it HAS to be the fibro! I also have ibs for years so I know that affects the body, but I’ve had tests, and everything always looks amazingly good. In fact a doc did a whole abdomen cat scan and there was zip, he said he never saw such a good scan, said people always have a little something somewhere and mine was perfect, no anything. But I FEEL horrid! I can’t make plans because I have no idea if the day they come, I can do it. Of course realistically I have to commit to plans sometimes, but then I’m so stressed worrying how I’ll be. I’m married and have the best husband. He doesn’t make me feel awful about having this, and does the physical things I can’t do easy. Always asks how I am etc, very supportive. If I have to cancel something we planned, he’s ok with it, very easygoing. He doesn’t really understand just how bad I feel because I don’t tell him. i don’t tell my family how bad I am either because it would upset them so what’s the point? I just plod along. I get worse every year and finally I’m really losing hope for ever enjoying my life again, especially since I’m aging too. I’m a very strong person mentally, but losing hope slowly. I’ve been reading this forum for years, and before I got this bad I used to think people need to toughen up but now I understand. Amazingly I sometimes push myself anyway. I’m 71 and just spent 3 years renovating my house, sanding, painting, fixing etc ( masks on of course). I don’t know how I did it feeling this bad and being this age. But I have no normal life and my happiness is like gone except on the few good days I have, which is almost never. My docs say it’s “ situational depression”, I can’t take meds for it either. How do you all get through your day and lift your mood in the midst of feeling horrible with no end in sight? Any suggestions I’ll take to heart. Sorry for such a long, depressing first post lol, and I wish you all well.

 

[sunkacola]

Hi BarelyHere, and welcome. If you have been reading this forum for years I'm sure you have read my advice post, and I hope you have tried the things I suggest there.

It sounds as if you are doing a lot despite feeling as bad as you do. I hope you are giving yourself a whole lot of credit and kudos for that. Accomplishing something each day and then giving yourself credit and praise for it is one good way to beat back depression. Even if it is a small thing, give yourself credit.

And if you know your triggers are allergies and sugar, then you can do a lot to avoid exposure to those things. Have you tried all of the various allergy medications and treatments there are? I only ask because there's been a lot of recent development in that field and if you have not seen an allergist recently, you might consider doing that. Not just a regular doctor, but an allergist.

Diet can have a huge impact on allergies as well, even if you are not allergic to anything edible. Some research into that might be worthwhile.

And depression is a really tough thing. I am a person who's lived with depression coming and going all of my life, with more coming than going over the years. When it has you in its grip, there's the feeling you cannot do anything, and the fact is it's extremely difficult to try to do something about it when you are on the bottom. That's why it's so important to set yourself up with things you do every day that can help to hold it off or mitigate the effects.

For me, that means getting outside every single day because nature always feels good to me. Keeping track of celestial events so I can go out and look up at night and see something cool like a planetary alignment or a super moon, because these things are so amazing and beautiful they lift my spirits and also remind me how small and insignificant I am and this whole planet is. Playing with my dogs and letting their joy in the moment infuse me with a little bit of their live-in-the-moment way of living. These things may work for you, but there are things that will. Maybe for you it's reading something special to you or listening to certain music or something else. But find something that is always pleasant for you, that gives you joy, and do it every day.

Is there a reason you cannot take meds for your depression? Sometimes even a short term use of medication can help to get you out of a bad one long enough to get other things in place.

You are way ahead of the game having a supportive partner. Some of us would just about kill to have that. Just not having to do and be responsible for every single thing on your own is an amazing and very fortunate thing.

My way of dealing with plans is I simply make them anyway. The main thing is I don't make plans with people who don't know that I have a chronic pain condition and who are not understanding when I need to cancel or reschedule. That way there's never any worry about it, because I know there won't be a problem if I can't do it when the time comes. I won't worry about it or feel bad if I can't do it. Worrying about whether or not you can do something ahead of time is adding to your pain. Do whatever you need to do to remove that worry.

On good days I rejoice and revel in every moment I have that is good. On bad days I simply find things that distract me, and I don't allow myself to spend one minute feeling guilty for what I am not accomplishing that day, and I consciously practice radical acceptance of what is happening in the moment. It takes mental self discipline, but to whatever degree I can practice it is the degree to which I can have peace of mind in that moment.

 

[BarelyHere]

Thank you so much for that long and caring reply. I’ll try some of the things you said. I tried depression meds but that category of drugs gives me weird thoughts. The last one I tried I woke up one morning afraid of my wastepaper basket! I knew it was the meds, weaned myself off and never tried them again. Also, the docs that told me they couldn’t help me anymore with my severe allergies WERE allergists, with good credentials too! Almost all allergy meds do nothing to even touch my severe allergies, I’ve tried them all and I did get shots over 30 years but was so allergic to them they had to keep making them weaker next appt, so I could never get the full benefit of how shots should work.. The only one that even helps me a little is a very old antihistamine called Chlortrimeton, so I just stick to that. Yes, you’re right I should give myself credit for what I can do, which is hard, because I’ve always been a go go person who’s always doing a lot and always has some big project, so now this is a glaring difference and depressing as I got worse. I am going to try your suggestion of getting myself out a little every day, no matter how hard it is to do it. I DO feel better when I do and I’m pretty good once I do get out there. Thank you so much, you sound like a caring person

 

[sunkacola]

I understand what you are saying. I was the highest-energy person I have known, and most people couldn't even keep up with me whether it was in stamina or speed. That has changed.

This kind of change is not something anyone can accept and adapt to overnight. It takes time and it takes some effort. The work it takes to become fully accepting of it is vitally important, though, and is something that must be done if one is going to have a good life with fibromyalgia. Fighting against it or allowing it to frustrate or depress you on a daily basis is like beating your head against the wall to try to cure a headache. Guaranteed to do nothing but make it worse.

I did a lot of things in order to reach a point of acceptance. And I still do those things almost daily because it's not something that is won and done for good, but rather something that needs maintenance. Giving myself credit for what I accomplish is one thing. Simply relaxing my high standards is another. Allowing something to take longer to accomplish than it used to......what difference does it make, really, as long as it gets done? Learning to pace myself and rest when I need to and letting that be OK. Reminding myself of the things that are really, truly important and being grateful for what I have and can experience. aTking great joy in tiny things, moment by moment. And other things. If you seek, you will find the things that work for you and over time you will come into acceptance.

You can do this. And we are here to support you all the way.

 

[JayCS]

Hi, BarelyHere - you've then seen that I often plug MCAS I guess?
In your case everything you're describing - fibro, real allergies, many intolerances, incl. foods and meds, but an antihistamine like Chlortrimeton helping - seems to point to MCAS as well as fibro...

2 ideas building on what has helped you:
Have you tried a 2nd generation antihistamine in comparison, to see if some symptoms are side effects? And have you tried low dosing the antihistamine for the same reason? As my MCAS makes me overreact to meds, I've found that low dosing things with too many side effects can be a good compromise.

 

[BarelyHere]

Thanks so much for this reply. I didn’t even know what that was, had to look it up. I’m definitely researching this tomorrow because I have a bunch of those symptoms. Thanks again