BarelyHere
New member
- Joined
- Jul 2, 2023
- Messages
- 3
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.