[rachna]

hello, my name is rachna av just turnd 30, i was diagnosed with lupus in august this year.

im addicted to excercize and used to train 7 times a week for 2 - 3 hours at a time. it was around jan 07 just after xmas when is startd too feel tired all the time, and slowly slowly, the tirdness and fatigue got worse. im tired all the time, i find it difficult to wake up in the mornings and when at work find myself straining my eyes from shutting. i was told i had dangerously low levels of iron and vit b12, and low bloood platelets.

iv sufffered ith the butterfly rash from being a teenager and as told at the tim that it was hayfever.

i have pain shooting pains in my upper arms n wrists, and have had a achilis tendonitis in my ankles for about a year now and they are very sollen, av seen a physio and nothing has helped. mornings are the worst as they are very stiff making it difficult to walk, to the point where i cant even put my heel down now. needless to say my running has completely stopped :-(

sorrry to go on and on about me but it just seem like no one understands and hen friend ask how are you - i think well if i sy am in pain again....

iv been on hydroxychloroquine for 3months and not noticed any difference. av gained weight, and i that gets me down n then i eat to cheer myself up cos i cant do anything and so it goes on. my stomache is very bloated all the time. im always teary too.

av been referred to an orthopaedic surgon so im waiting for my app.

thats my story so far,

thanks for listening guys xx

 

[LolaLola]

Hello Rachna, Welcome!
You have had some big changes to put up with in the last few months.
Do not be frightened to change Docs. if you need to.
It is a sad fact that a lot of friends simply do not understand.

xx Lola

 

[Katharine]

Hello Rachna and welcome

It is very hard to accept the changes in life that lupus can bring about and all of us, at some time, need to moan a bit an go on about just us. So don't worry, that's one of the reasons we're here.

I wanted to stress here that you are still pretty early on in your treatment. 3 months is about the quickest that plaquenil ever really works and for some people it can take a LOT longer.

It's also important to know that plaquenil is not your only option. Sometimes, in the beginning, when we don't yet know much about the disease we accept the meds that the doc has prescribed and we wait thinking that anyway there are no other options. There are other options and if things are bad you need to get used to "complaining". I have a feeling that doesn't go with your usual mindset so you might find that one difficult to learn.

The problem with lupus is that there is no one standard treatment. The disease is as varied a the people who get it and treatment can be just as varied. You will often be started on plaquenil but other meds can be added to achieve far better effect so if your struggling do speak to your doc and explain to him/her what you can't do. It's no use telling a doc "I hurt all over" as that means nothing to them but saying "I can't do X, Y and Z" will often make them realise that that really is not normal.

Unfortunately some people with lupus suffer from quite a few tendon problems. It is relatively rare (compared to some of the other "typical" complaints) but a real pain for those that suffer from it. I have so called "weak tendons" and have to be very careful what I do and how. Thankfully, with my reduced activity, I can usually get away with just wearing support bandages and the odd limp when needed.

Your weight gain is probably due to your very reduced activity and if you were an exercise addict is certainly all the harder to accept. I used to work with horses (rode 6 or 7 every day) and am a black belt in aikido so I really do understand just how frustrating it is to become far too inactive.

The problem is, you can't fight through this disease. Forcing yourself to exercise and push it when you don't feel good will only make matters worse. You may have to learn a great deal of patience and "different" goals.

I found that my goals became as ridiculous as being able to do a twenty minute walk with the dog at a "normal" speed as opposed to hobbling along like a ninety year old.

It took me a good year (at least) after starting treatment to get there but I did. I can now walk pretty briskly (no hobble) in the woods and I can do three quartes of an hour easily, sometimes an hour. I still have to listen to my body. If I feel tired I have to rest and if I feel generally tender all over and my chest feels tight (I have some breathing issues), I know it's not the day to push it. I have a little idea in my head about starting aikido again (very gently of course) but I'll have to see if that one works out.

Weight wise, I gained 8 kilos due to a long flare I went through (before meds). I have to consider myself really lucky to have only gained 2 extra kilos from meds (including prednisolone). No-one else noticed all this - it amazes me how much extra weight you can have without people noticing - but I felt terrible about it. I was almost obsessed by my weight and, like many, felt that if only I could get off the prednisolone it would help so much. Well, the rheumy was trying to get me off pred, tapering slowly, and I had a massive setback and breathing problems.

That really made me realise that that extra bit of weight wasn't really important. Not being able to breathe is rather frightening! I have actually lost two kilos since, so am back to the eight extra that I had before meds. If I can slowly lose another four through gentle exercise I'll be happy and leave it at that. I don't think I'll go back to my "ideal" 60 kilos but 64/65 will suit me fine. It might seem a silly little goal but it is there and gives me an incentive to keep eating healthily and walking steadily every day even when I don't feel like it.

I have rambled terribly there but just wanted to encourage you that you can get there and feel a lot better about all this.

Katharine

 

[rachna]

Hey guys,

Thanks for replying, its nice to find a way of speaking about lupus to people who are experiencing it too, as friend and family try to understand but don't quiet get it. I guess unless u are going through it u don't understand!

Your right Katherine - im not one for complaining about things but i will try and pursue the matter with my doc. Sometimes i just think that they r going to think 'here she is again' the girls on the reception desk at the surgery know me by name now, thats when u know that ur there too much.

I cant believe that it can take up to a year for plaquenil to work, thats quite frustrating.

im finding it hard to accept that i cant do much and i do try and push myself even though i do not achieve anything from it. totally understand the breathing problems i have had that too. my doc thought it could be asthma but that was ruled out.

u really dont have to appologise about the rambling on iv bretter

talking about weight gain i used to be 54kg and now im 60kg. i think the biggest hurdle that i have to face is learning to accept what i can and cant do.

thanks for the support

love always
rachna xxx

 

[Blue*Mist]

Hi Rachna, I was diagnosed with MCTD (mixed connective tissue disease) in August. Mine is SLE overlap with mainly with scleroderma and sjogerns. In June I had many of the same symptoms as you do.. Anyway... I wanted to ask if you've had a Vit D blood test recently... I was severely Vit D deficient and folic acid deficient. Since I started taking supplements I've had less spasms, less curling of my toes and fingers... Tendonitis seems improved... could be a coincidence (Plaq kicking in) but I swear its the Vit D... Just a thought...
Good luck with everything...

 

[rachna]

Hi.

Ive not had a vitamin D blood test done, they tested for iron and b12 which they said were dangerously low.

Ill bear that one in mind and mention it to my doc when i see him next.

My appointment with the orthopeadic surgeon has come through and is in a few weeks time.

Thanks xx

 

[onetay]

Hi Rachna,
You have a lot to handle right now. Do you have a gp? If so give them a call let them know you are crying all the time. I am hoping that they will put you on anti-depressant. Often if we can stop the crying and feel just a little better about ourselves it helps to get other things under control. There are a lot of anti-inflammatories that might help with the swelling and some pain pills that might easy the pain. I did not say make it go away, but one can always hope. These are all things a gp can give you if you talk to them about what is going on.
Hope you feel better soon,
Tammy

 

[Jesse88]

Hi Rachna and welcome.

Don't be discouraged about the Plaquenil time frame. Most people see results within 6 months. But, as has been said previously, you may find that you need another medication added to the mix for better relief. It all takes time, so be patient. Remember we're here to listen. We totally understand what you're dealing with these days.