Telling people about it makes me feel better!

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Telling people about it makes me feel better!

Postby martyn » Wed Oct 22, 2014 8:11 am

I will apologise now because this is probably going to be a long depressing post but writing it down makes be feel better.

My name is Martyn and I have been fighting with this for 11 years now. I was a fit an active Scout Leader into mountain walking and loads if adventurous things.

2003 I started getting pain in my legs not sharp pain,I have always described it as if I have dug the garden and everything aches. I saw consultants and doctors. I had a good job and was on bupa. I was diagnosed with seronegative RA. I was put on celebrex and dam can't remember name (low dose cancer drug) and folic acid and then another drug. Nothing really seem to work. (Except all the dry skin went from my elbows).
I fought with pain everyday, looking back now I can see I was slowly going down hill but your the last to know. (There is a thing I have seen on Facebook - People with depression aren't weak they have been strong for too long).
Odd things I would do, At lunchtime drive to tescos buy a sandwich which I would eat in the car crying. I secretly starting buying extra lottery tickets. And I slowly shut myself off from the world. I would play computer games all the time. My now ex wife would put food next to the computer. The pain and the tiredness were now all of my life. I decided that life wasn't worth living. I was very clinical about it I know a henry hoover tube can go from the exhaust pipe of the car to the back window. I was kind if organising things. One evening my wife was talking to me about something we were going to do in the Summer saying she wouldn't go and I said 'but you have got to go I won't be here' slowly it all came tumbling out. One of my few remaining friends is a doctor they got me to go to the doctors the next day and I was put on Antidepressants. For almost a year I was OK, still in pain but surviving. I came to the conclusion that perhaps it was the stress of my job. So I changed jobs except I had to fill in a form saying what drugs I was on. So I decided I was better and stopped taking the Antidepressants. As the year went on I slowly declined crying in the car, losing contact with the world. Christmas time my mum said I looked like a ghost. Between Xmas and new year I found out my wife was having an affair. It kind if shocked me back to life I tried really hard for a long time. Also people who cared about me help a doctor friend said I should ask the doctor for a steroid pulse. It was like a magic from someone who could not walk 20 yards I could run up a flight if stairs. It was quite Short lived but it did work for a bit.
So now 2 years on I'm divorced have a new girlfriend as for medication.

I m now on
20mg of morphine in the day and 30 at night. It has taken away the pain but its still there (I tire really quickly 200 yards is a long way)
Antidepressants and blood pressure tablets every 8 months the doctor gives me a steroid pulse.
I have tried lyrics - I lasted 2 weeks the constipation was terrible.

Biggest problem now is me. Biting off more than I can chew physically -
Yes, I'll cut the lawn or I will help with that. It comes in waves some days its hard to move. I will drive to work and the effort to get out of the car is incredible. Or just to sort out something on the floor getting down is hard but back up again.

And Brain fog - remembering 3 numbers is beyond me. It sometimes takes all my concentration to do simple things.

But I am still here and still struggling on.

M
martyn
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Re: Telling people about it makes me feel better!

Postby Theresa34 » Wed Oct 22, 2014 10:31 am

Hi x

I'm a mum to 3 and married. Diagnosed with psoriatic arthritis last year and fibro this year. I was on sulfasalizine last year for the arthritis but it made me very ill so had to stop it. The rheumy has decided my arthritis is currently in remission so not taking anything for it. When it starts up again I have to go on methotrexate which might be the cancer drug you couldn't remember. I'm taking Amitriptyline and gabapentin for the fibro and vitamin D and thyroxine for thyroid. Too young for all this crap but hey ho! Trying to keep positive! I used to be a lot worse before the meds, felt like I had constant flu as I was so achy all over. Feeling a bit like that now but wondering whether its a flare. I'm still learning and trying to figure stuff out. I try not to think about the future and live in the now. And yes, we aren't weak, we are strong. Even if we don't feel like it. Getting out of bed in the morning and getting the kids off to school is an achievement. I know its difficult for you going to work but you are doing it. Be proud of little steps x I like to think that I'm making the best of a bad situation. It's not easy and it can be so depressing :( But sometimes you just have to get up and move and get on with it. If it weren't for my kids I wouldn't have a reason to get up, you know? My husband has struggled with the change in me. We have been together for 13 yrs, married for most of those years. But I think he's sort of starting to understand a little. Sometimes I try to remind him of when he has had the flu and tell him I feel like it the majority of the time (I dodged a break from it). Its tough for anyone to get how youre feeling. This is a great place to ask questions and generally let it all out x
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
Theresa34
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Re: Telling people about it makes me feel better!

Postby martyn » Wed Oct 22, 2014 2:45 pm

Thanks Theresa

Yes, the cancer drug was metatrexate, I was fine on it except it made all food taste greasy

I was also on sulfasalizine - It made the dry skin go from your my elbows (interesting that it made you sick - its' 1/2 of another drug dipentum that is for lower stomach problems - I worked for the company that made it).

I've been on amtriptalyne too and diateiptalyne

Like you said the major thing I have learn't is not to give in to suffering, the slide to depression doesn't take much and you don't know about it.

I know exercise does help (I actually ended up shouting at a locum doctor that suggested I should try and go to the gym, when walking across the car park and up a flight of stairs in the surgery had nearly killed me) but I nned to take it slowly
martyn
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Joined: Wed Oct 22, 2014 5:47 am

Re: Telling people about it makes me feel better!

Postby Theresa34 » Wed Oct 22, 2014 9:32 pm

I'll tell you how the sulfasalizine affected me. Well I started on one tablet a day for a week, then I had to go to two for a week then three which was maximum dose. I was on the second dose for just two days when I started feeling pretty rough. I broke out into a bad rash which resembled guttate psoriasis (I have a small patch of psoriasis on my scalp). My cheeks went red and felt hot and like sunburn. My lymph nodes in my neck swelled up and I just felt so so poorly. I tried to get hold of my rheumy nurse but couldn't so,left a message. I then ran the gp nurse who said she didnt think it was an allergic reaction to the drug and to keep taking it! I had my doubts but she was a nurse so I took another tablet. The rheumy nurse finally rang back later who said to stop taking it immediately. I had to get bloods done and things were bad. I was given antihistamine by the gp and it took around two days for things to get better. I reported the nurse who said I should continue the med :roll:

As you said re the depression, it is very easy to fall into. I get very close and sometimes walk the line between being ok mentally and not ok. Sigh. What can you do?! :-)
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
Theresa34
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Joined: Fri Feb 21, 2014 10:44 pm


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