Working with chronic illness

[Emfrenette]

Hi there I'm just in my first year of this diagnosis of crest syndrom and reynauds . I'm still in the dark since doctors dont really know what to give me and in canada things arent as advanced as they should be compared to alot of you in UK , I'm right now on amlopmdipine and amitriptyline for migraines (test run) that I just started and pantropapozol for GERD/reflux after I just underwent a endoscopy last few months , I've been getting alot of diff pains at work my face looks like I'm hot faced all the time when I bend down feels like blood rushing to my head and I feel light headed. I have a sore left shoulder for ever now and I'm in a workplace environment where everything needs to be fast paced and punctual and I do deal with loads of stress . I try to calm down throughout the day and tell my co workers I need to step away I cant just do that because theres not enough of us trained to do my job so I feel relied on constantly . I'm on my feet 8 hours and my knees always feel hot my legs at the end of the day are swollen yesterday worst it's been in a while and I'm getting concerned I have times I cannot run to save my life feels like bricks holding me back my butt hurts my thighs my shins my ankles . I'm not sure if anyone experiences this. But its sucks!

[cleoshome]

I have both and it caused CHF, game changer for sure. But now I'm suffering wedge compression fracture in my back, as I have malabsorption syndrome, protein deficiency even though I do protein shakes, now diagnosed with possible muscle disease from test EMG. My legs cramped so bad, couldn't handle stand on them to try and walk, felt like tendon was going to snap, even from end of leg to my foot couldn't put foot down . My doctor QUIT. Instead of taking specialists recommendation for muscle serum enzymes, and MRI of spine. So, on to a Dr hunt I guess. While suffering.

[cleoshome in reply to cleoshome]

Yes also your butt hurts, everything hurts.

[juliealicegreer]

I gave up and went on the Invalid's benefit. Life's good now. I rented my double garage out for extra income. Love, Julie in NZ

[pallinurse]

Hello! Not feeling well plus not having answers and the help you need make these kind of illnesses doubly hard! I had GERD, shortness of breath, Raynaud's, and edema in my legs for over a year before I got diagnosed. Plus the connective tissue issues where it feels like something is holding back your limbs when you try to move. It is very fatiguing. It has got to be very difficult for you to be in a job that requires excessive standing and fast-paced stress. My heart goes out to you! I was teaching but was able to sit with my feet up under my desk part of the day, and I was still beat when I got home every night and went straight to bed.

I have been on 40 mg of omeprazole once daily for the GERD to prevent the acid running into my lungs. This really stopped the shortness of breath from progressing and I have even had some lung healing. Had to go on probiotics to prevent loose stools from the chronic omeprazole, but not a problem.

I like Julie in NZ's idea of disability status if that is available to you, or some kind of job with less stress. I went back to school so I can teach online now and have greater control over my days--this helps so much. The only other thing I can recommend is to get in water and sun whenever you can. Don't know how the sun will work out in Canada, but if you can get into a pool a few days a week and gently move around, the resistance in the water is a safe way to keep moving without getting hurt. Has improved my life so much. I am wishing you comfort and water! Love from the US.

[Emfrenette in reply to pallinurse]

Thanks so much for your reply . Swimming is fun for me and my daughter maybe something we should take on more of regular basis ! I'm to be seen again by my rheumy next month maybe I can get more answers then. It's just hard to explain to coworker yes I look fine but yesterday at work was tough my face was red I felt like my blood pressure was up I was sweating my legs were swollen and we were busy at work so I felt like if I said anything I would let them all down . It just sucks when your job is so demanding .

[BCTK]

Dear one...your story makes me want to cry... I did not have to work but had all your symptoms.. how horrible that u work..it is clear that U have not been medically cared for.. I have found being calm in the evening helps me the next day..I would suggest you change doctors immediately!! Ur symptoms r not being addressed.. I wish I could b helpful.. I’m sending this text to you as a gift of warm care.. keep going to medical experts that zero in on your that is totally out of order... good luck my dear..