Feeling sorry for myself....

[Dan30cr]

Roughly two years ago I was a relatively healthy man, who enjoyed fitness. Now I can barely move without pain and the list of conditions I'm suffering from grow ever larger.... today I can add fibromyalgia to my lupus and hypothyroidism... starting to lose hope of living a normal life.... my work is suffering badly and I don't think it will be long before my manager loses his patience with me and looks to get rid of me. Just trying to look on the bright side is becoming a challenge...

[whisperit]

Hello Dan30cr,

I can't offer much practical help, I'm afraid, only sympathy. Like you, 18 months ago, I was a fit bloke, getting on a bit (55 then) but mountain biking twice or three times a week and walking regularly.

Since then, it seems like my life has imploded. For the past month or so, I have been virtually housebound, and yesterday, I had a meeting with my employer to start the process of early ill health retirement (financially, it'll be a minor disaster, frankly). I spent a sleepless night, fighting nausea, hot flushes and chills, a thumping headache and general worry.

Psychologically, I've tried to cope with some basic stuff - accepting each new development as a kind of 'interesting' challenge to understand; setting some personal goals that I can achieve regardless of feeling ill (like reading, organising my CD collection, sending emails and cards to friends etc.

But it is tough

M

[nmcleod]

Bless you, I understand , Are you under a consultant? Prednisolene Steroids get me moving.

Norma

[Dan30cr in reply to nmcleod]

Just had a lovely steroid injection... lol

[fifi6]

I feel your pain... I also have lupus and hypothyroidism and apart from the aches and pains which i can deal with, I am suffering from unbearable fatigue When I feel slightly better i can just about manage a run but when it flares up i'm almost bed ridden!! Are you on any form of medication? I'm very reluctant to take the hydroxychloroquine because of the effect on the eyes but not really sure there is anything else to take. I do feel that when I'm able to exercise the symtoms improve. Hope you feel better soon.

[Dan30cr in reply to fifi6]

I'm on a laundry list of meds. Hydroxy chloroquine, methotrexate, levothyroxine, steroid injections, ibuprofen, co-codamol, omeprazole and tramadol when needed.

[Sara_A]

Hi,

Have u spoken to ur boss about ur health? Is there an occupational health dept attached to ur company? Just wondering if they can make any adaptations to make it easier for u.

I went thru this a few yrs back and now I can only manage to work 2 days a wk. But my employer at that time had to make allowances for me under the disability discrimination act.

I suffer with fatigue also, today all I've managed is a bath to ease my pain and that's exhausted me! I'm only 37 so it's a lot to deal with when u want to be out doing just everyday things!

[Dan30cr in reply to Sara_A]

I understand that. I'm 31 and hate being restricted by this illness. Before I was diagnosed I exercised daily. Now if I try it puts me on my back for days. Even working is proving to much.

[Sara_A in reply to Dan30cr]

It's a very hard condition to deal with. Are u on any meds? What sort of work do u do? Is there maybe something else u could look at doing that might be easier on u?

[nmcleod]

So sorry Dan, my heart goes out to you.FOR YEARS I FOUGHT THIS HORRIBLE DISEASE.S.L.E, ETC.NOW, SADLY AFTER OVER 20YEARS, I CANT FIGHT ANYMORE!!!TOO TIRED!!

Life isToo Hard especially when you are on your own and poorly.Easier said than done but BE Strong.!!! Norma.x

[Dan30cr in reply to nmcleod]

I know fighting is exhausting but I'm too proud not to... think pride and my kids are what keep me going.

[Sara_A]

Yeah that's definitely right u have to do it for the kids, I struggle everyday and feel awful when I can't get out with mine 4yrs and a 7 month old. Some days like today all I can do is struggle thru the day as long as they are fed and dressed that's all I can do. They are what gets me out of bed every morning I think if it wasn't for them I'd stay in bed most of the time.

It's ***t but keep going, easy for me to say to someone else ha!

[Dan30cr]

Lol same... but if we can all drive each other isn't that the idea of a support network?

[Sara_A in reply to Dan30cr]

Yeah definitely, I hope it works out for u soon and u can find a solution. I'm off to rheumatologist now see what's next!

[creaky]

Dan, you have some great replies here, so I can't add much advice really.

I just wanted to say that I'm sorry that you are having such a rough time, and I really understand .

I took I'll health retirement two and a half years ago and I'm still really sad about it, but it was a relief not to have to worry about being well enough for work. I'd got to the point that I was just working and sleeping! I had nil quality of life.

When I retired although my bank account took a hit, I found that I could use the energy that I have to improve my quality of life a bit.

My employers were very good to me, they made some adaptions to my work and eventually offered me a new role that was much less physically demanding, but mentally stressful.

Do you have an occupational health department? They helped me alot.

If your manager is struggling to understand, lupus uk have a great booklet for employers, I would just put it in you managers hand and advise them to read it.

Helen

[Dan30cr]

Unfortunately, I think it will be a long and stressful journey to achieve a suitable working environment... but ive got to start somewhere.

[Hidden]

Hello,

I am sorry to hear that your heath and well-being are currently affected to that extent.

If you are worried about how your health is affecting your work and how to discuss this with your employer, you might find these two leaflets that can be accessed or downloaded on our website useful lupusuk.org.uk/wp-content/u... and lupusuk.org.uk/wp-content/u...

These booklets are also available in physical format, so if you would like them posted to you, please just send me a private message or email [e-mail] with your name and address.

It is understandable that you are finding this very stressful and difficult to deal with. You might want to also read this leaflet lupusuk.org.uk/lupus-and-de... . We also have various support groups across the country and there might be one in your local area where you could find additional support and chat with people who have been through similar experiences. You can find out about a local group on our website here lupusuk.org.uk/regional-gro...

[milkwoman]

Hi Dan -

I'm a female in the USA and I have hypothyroidism, lupus and Sjogrens. I was diagnosed with all of these a little over two years ago but was sick for about 2.5 years before that.

I can relate to your story. I'm also into fitness (was in the best shape of my life prior to diagnosis). I know I won't be at the level that I was (strength training, core workouts and HIIT cardio) but I'm back into working out (20 miles per week on an elliptical at an 8:20 min mile average pace) and also doing core routines, stretching and weight training (lower body mostly as I'm recovering from two torn ligaments and 2 torn tendons in my right elbow and as well as a left shoulder injury). I've had steroid injections in both locations as well as PT. As long as I'm careful, I don't have pain.

The last two years have been rough - getting meds right and dealing with fatigue, muscle and joint pain, dry eyes, headaches, stomach issues, etc.

I can tell you that the BIGGEST thing that helped me was getting my hypo meds right. At first I was undermedicated and watched myself losing stamina and endurance as time went on. I stopped exercising for 6 months - I simply couldn't do it anymore. My body was broken. Then, I started increasing my T4 and was feeling better, so much so that I started exercising again. However, I ended up increasing too much (also added in T3) and became overmedicated without realizing it. I always thought I would go "hyper" but I didn't. Instead, I became increasingly unwell and feeling more fatigued and unmotivated. I had to quit exercising again after only 5 weeks after I started - that break lasted 3 months.

I'm now properly dosed on T4 only and my workout routine is back. I'm now in my 10th week and I'm feeling stronger every day. Also, muscle tone and stamina/endurance are returning. Mentally I am in a good place and I have hope for the first time in about a year.

Oh, I also realized that I am very sensitive to filler ingredients. I was on a generic levothyroxine and when I switched to Tirosint - which only has gelatin - many of my weird symptoms went away. I also take name brand Plaquenil (hydroxychloroquine). That has also made a huge difference in how I feel. Something to keep in mind with your meds.

I just wanted you to know that I understand how you are feeling and how frustrating it can be. Seems very unfair, I know. I spent weeks literally laying on the couch feeling useless - tired and in pain and wondering if this is how life was going to be. I hated myself and I hated how I was always sick. Being fit and healthy and strong is very important to me - then and now. Some days workouts are difficult but I've learned to trust my body and know when I can push on through or when I should stop and take a break. I feel so accomplished when I persevere and typically end up feeling better after the workout than I did before. Must be the endorphins.

Take a look at what meds you are taking. Also, you may want to post your latest thyroid blood test results over on the Thyroid UK forum. The folks there are very smart. Not being properly medicated could be the cause of why you are so unwell. They can help.

I wish you the best.

Tracy

[Hidden in reply to milkwoman]

Inspiring! I miss my body and mind x

[Silvergilt]

I feel you. I was a bodybuilder when I started getting sick. It is highly frustrating to have health pros insist exercise will help when there's no physical possibility of being able to do any. I have the added benefit of being obese and female, so I'm always told to just lose weight as if it was a cureall - when someone can figure out how I can gain weight on 1200 calories a day, let me know.

I do very adapted yoga now; only ten minutes a day at the moment but it works for me. I've given up on trying to lose weight and go for Health at Every Size, just working on what I can. I'm probably hypothyroid but I've given up trying to convince anyone and just do what I can, when I can, and accept the past me is gone This is my New Normal, and I work with that

I don't have any answers for you; I now work from home part time as it's the best I can do. I tried to hang in there job wise but I just couldn't do it, and bring self employed was more work, not less. At the end of the day my body calls the shots, and I can only operate within the perameters of my ability. I've learned to make my peace with it, but other people's expectations are what tend to mess with my inner peace. I wish you hope!

[Hidden]

Hi Dan, sorry you are feeling a bit low, I know when you get ill you have major ups and downs. Its hard to accept that it as if you have become someone else, hopefully you will find the right medication that works for you. I used to love to workout and it kept me so hyper and happy, its a vicious circle really. But lets all have hope x