My story

JayneN

I have struggled with PA and Fibro now for 3 yrs. I am not able to take many of the meds that are available because of an allergy to codeine, asthma, hypothyroid and a genetic blood disorder.

I can only take paracetaol 2 x 4 times per day, an anti-depressant in the morning and before I go to bed for pain relief and twice yearly steroid injections. I feel pretty low, very tired, I can't move much for the constant pain and I admit that I often feel very sorry for myself.

At what was one of my lowest points 2 yrs ago, I signed up to an online course. It was a mad risk. I would have been devastated if they had rejected me, but they didn't. I think that I did it because I didn't want my brain to die too. As part of the coursework I have created a website (using voice recognition software because my fingers don't work too well these days) that looks at different types of arthritis and tries to explain all the stuff that for the last 3 years has totally bamboozled me.

I was stunned by how much the Fibro page actually related to me and how I feel. Because conventional treatment isn't available to me I decided to look at what natural remedies and complementary therapies might do for me instead. I admit it never occurred to me to try any of them until now. Believe me I am going to try them all! Surely something must work. If anything has worked for anybody please use the site to tell everybody about it. I for one really need to find something that can help me to get out of the brain-fog and forgetfulness and all of the other stuff that makes me and those around me think I am going crazy.

To look at my site, go to arthritis-support.weebly.com or arthritis-support.wikispaces.com. It would be great and worthwhile to me if it helps anybody else out there to understand stuff that bamboozles them.

frogmorton

Hi Jayne

Welcome to the forums from me.

How awful for you to have three such conditions and only be able to take paracetamol. I am so very sorry.

However l am glad you found this site and hope you will find the support of the guys on here as wonderful as l have. Without them l don't know where l would be to be honest.

Can l also congratulate you for doing your course in the circumstances you must have had to work very hard compared to the other course members to achieve what you have.

Love

toni xx

JayneN

Thank you for the warm welcome. I had to do something! I can't go to work, I couldn't get to the bus stop , and I haven't driven since it all started with a thyroidal infection 3 years ago. I am now housebound and only get to go anywhere when my fantastic husband takes me, as long as it involves no walking.

I daren't even think of trying to get a job because I know I would let them down because my body would let me down. The degree is my way of proving to myself that I am not obsolete, and the site is the only thing I can give to society. We were supposed to do a website for a business but I don't go anywhere and I don't know anybody anymore. My whole life revolves around the Internet. My tutor recommended the arthritis site and I am so glad I did it, even though it was impossible just to think clearly some days.

julie47

Hi Jayne

Welcome to the forum and I am also sorry that you have suffered badly for the last 3 years with only paracetamol and 2 injections a year.

I really hope the alternative meds that you about try work for you.

And well done for doing your course, that must have been some challenge.

Take care
Juliepf x

speedalong

Hi Jayne and welcome,

well done for seeking out the course and using your skills to support others.

On here you will find friendship, understanding, support and an unusual brand of humour.....

Speedy

JayneN

Hi julie

Such a lovely welcome from everybody, its nice to be amongst people who understand what its like to have what seems easiest to describe as toothache all over your body.

The course has been a lifesaver for me. It makes my brain work and makes me think about other things than the pain. Sometimes the fog is too thick to break through and I can't concentrate on anything else, but I think that it's the best thing I could have done for myself. I would recommend online courses to anybody in the same circumstances.

Have you any experience with natural remedies? I have multi vits all the time cos I think it helps me to fight infection and I have a soya thing for menopause that seems to help me so why not for the PA and Fibro?

JayneN

Hi Speedy
I think that we would all crack up it we didn't have a sense of humour. It makes us stronger don't you think?
When I am feeling really bad but working to a deadline they know at uni cos i write in a very light and humourous style. I think it keeps me sane.
I think there will probably be areas on my site that are a bit light. That will be when I have had a bad day but have tried to keep to the tight schedule, I will put them right when things calm down and I am having a brighter day.
I had my steroid injection a couple of days ago so I am waiting for it to kick in. I hate having it done cos it is such a pain getting to the hospital and the rheumy dept and it hurts! But its soooo worth it when it kicks in and for a few weeks I feel so much better.
I was given some steroids a few months ago for my asthma. They didn't do much for the asthma but I had a couple of weeks where i could walk upstairs like a real person.

barbara12

Hi jayne
And a very warm welcome from me, Im so sorry you can only take paracetamol, its not much to ask to have something to at least take the edge off the pain.
Congratulations on the course you have done, I think that any distraction from the pain is good, one thing I am considering is acupuncture, I have heard such good reports from some of the lovely people on here.
I will certainly have a look at your website , Like you say you will try anything.
I do hope you stay with us, and look forward to you posting more.
Barbara x

JayneN

Hello Barbara
First of all, thank you for saying you wil look at my site. Its not much but all my own work, apart from the research to get the info and verifying stuff with at least 2 sites saying the same stuff.
I thought about acupuncture but I hate needles! I am a little bit desensitised from all the blood taken when they tried me with methotrexate and sulfasalazine, neither of which suited me. It was a couple of years ago since I tried them and I am keen to have another stab (excuse the pun) at them. They say the body changes every 7 yrs and i am way over the most recent milestone so you never know.
I was told by my consultant that our pain management clinic do acupuncture so when I eventually get an appointment I will ask about it. I dont think I could afford to have it done privately.