it's starting to get a bit annoying, just looking for some support
Posted , 7 users are following.
The symptoms started about a year ago, and like many cases of HSP the diagnosis was tedious, confusing and long.
So far, I have realised that the disease is rare enough for doctors to make mistakes and wrong diagnoses as well (they are human after all). Another thing I have realised is that the symptoms vary per patient. In my case the flare is continious, although the amount of spots do vary; so I might as well call it a permanent dynamic rash. Often the severe rash is accompanied by leg edema and sometimes with a fever. Furthermore, I often have pain in my stomach (at least once a week), making it hard to get my work done. And I feel tired and apathetic (I genuinely feel sorry for my loved ones and colleagues, since I do not feel as the same person I was before).
I am a adult woman in my mid twenties and lately I have been feeling like a 60 year old woman (supportive stockings included......, which I can guarantee is not as sexy as it sounds...). I have had to make serious alterations in my daily routine (less sports, no alcohol, fewer parties) and yes I think I have now reached the point where I can say that it is starting to get a bit annoying. I feel guilty towards my loved ones for being such a sorry sack and at the same time I feel like I would love to crawl up in a bal and stay in bed for most days. It's hard to pretend towards my friends that everything is "fine" and no I am not pregnant, I am just not drinking. It's hard to keep up with the work I love doing at the same level I used to (I loved working late getting lost in my thoughts and theories). It's hard to be the person my partner fell for, since I am clearly not the same person any longer.
Long story short, I am quite the stubborn person and usually I would not talk about these things (it feels like a weakness). However, I have realised that I might need another friendly face with similar experiences to talk to about these things. And I promise, I can be a good listener too 
0 likes, 29 replies
natalie77410 annabel46039
Posted
Hi Annabel,
I am pretty much in exactly the same situation as you. I'm 23 and have had symptoms for around 18 months now. The rash was constant and painful and the stomach pain never fully went away, I also had joint swelling that meant sometimes I couldn't walk. Some days are better than others but I never know what kind of day it will be when I wake up. I have been treated with high dose predisone which I have been weaning off for the past four months. Every time I dropped down a dosage my rash came back severely and the stomach pain was bad. But I hate prednisone so I just kept going. I'm now down to 12mg and I get symptoms even without dropping down. My doctor has doubled my Imuran dosage to 50mg to try and get off the prednisone and then I'm hoping I can go back down to 25mg and then off it completely eventually. I'm not sure if you have been offerred immunosuppressant medication but the Imuran (Azathioprine) has helped with my symptoms, especially combined with the prednisone. They never fully went away but for the first time in 18 months I have seen my legs without spots.
I can totally sympathise with feeling that way too, it can be really depressing to think that you're going to be sick for the rest of your life and a lot of things you had planned aren't really reasonable anymore. Try not to feel guilty because it's understandable to feel sorry for yourself and it will take a long time to come to terms with this illness and get used to it. Hopefully your loved ones can be patient with you even though it's hard for them too. My doctor has prescribed me 10mg/day lexapro (antidepressant) because the prednisone made me quite depressed and it was taking its toll on me and my partner. She said I can go off the antidepressants in about 6 months when I'm off the prednisone and my illness is under control (fingers crossed). I don't like the idea of being on antidepressants but to be honest I feel like we need all the help we can get and if it makes life a little bit easier then why not. [before HSP I saw a pyschologist for help with low mood and anxiety].
On top of not drinking and feeling low, the prednisone has made me put on 10kg and given me acne as well as a "buffalo hump" on my back and a lumpy moon face, so I'm not exactly feeling social. I avoid catching up with friends because I'm embarassed about the way I look and I don't want them to ask what I'm up to because then I would have to explain about being sick. My close friends know and understand but I avoid anyone outside my close circle.
I hope you see some improvement soon and find these forums helpful, it's nice to know there's someone else who understands what I'm going through.
Natalie
annabel46039 natalie77410
Posted
Hi Natalie,
I definitely find these forums helpful! Because it is such a rare and inconsistent disease (at least in my country) the doctors don't really know how to help and there are not many people to ask. Luckily, with forums like this it is easier to discuss symptoms and possible treatments with other patients/relatives of patients. And it definitely lifted my spirits up already.
And it is sad to hear that you are suffering that much from the side effects of prednisone..., I hope your health will get better so that you can stop using the drugs al together.
And as for the social aspect. I can only say this from my own experience: when I don't feel that great myself I also tend to exclude myself from social events. However, this usually only makes things worse, making me feel even lonelier. So, indeed, friends will understand and won't mind too much (especially about appearances; they should like you for you and not for how you look). And sometimes even when I really don't feel like it I try to push myself anyway, knowing that it'll feel better in the long run. This also works with sports for me. And of course in case of actual physical hurt it is kind of hard to join in social events (then I also tend to stay home).
In any case, I hope you will feel better soon!
amy93358 annabel46039
Posted
Hi Annabel,
Finally!! Someone who gets it!! I was diagnosed with HSP in 2012 (Yes...really, 5 years ago) and I have been pulling my hair out ever since with the condition. No one knows what it is (most Doctors included), there is no treatment and when I was first diagnosed I was told I would have it the once but that would be it. Little did I know then that I wouldn't be so lucky and that actually my life would genuinely not be the same again.
I was in my second year of University when it first hit me, my mum was over visiting and I happened to mention that I had this weird rash all down my leg. I showed her and we talked about the possibilities; she remembered speaking to me the night before when I had had stomach ache; the week before I had a sore throat, and that day I had been cradling a hot water bottle like my life depended on it. My mum decided it was enough to warrant concern, so off to A & E we went thinking at absolute worst it was Meningitus. 3 hours later I was admitted to hospital and assigned to a Kidney specialist who still did not know very much about HSP, but he tried!
As much as my friends cared about me I wasn't able to live the party girl lifestyle anymore. I lost count of how many arguments I had with people having to explain my mystery condition and why I now needed to eat all my greens, sleep 8+ hours a night and basically treat my body like an absolute temple. Evenutally they stopped asking and got used to the idea that I was now, for all intensive purposes, an old woman in a young woman's body. How do you explain that you have very little immune system, and that if you let yourself get ill or run down then you will end up with another bout of HSP which could lead to something as awful as kidney failure? For such an invisible condition, it really does change your life.
The hospital tested me and my kidney's for about 6 months after the initial diagnoses but after that point I was discharged with a word from my consultant that by this point it was never really going to go away and that all I could do was adapt my lifestyle to fit what my body now needed. But, after 3 years outside of the hospital and countless arguments with bosses refusing to accept I had a medical condition I went back to my Doctors and demanded that I be recognised as a person living with a lifetime medical condition. I have since seen a specialist once and I am due back for a catch up on Thursday (2 days away), though I am almost sure she is also going to try and discharge me.
Fast forward a few years and I am now 25 (26 this year) and unfortunately well accustomed to a life in the slow(ish) lane. I have continous rashes and I have now cut out partying, alcohol, caffeine, and late nights. Now, I drink more water, eat more fruit and veg, sleep at least 8 hours a night and take Vitamins such as Cod Liver Oil to try and help with the rashes (specialists suggestion). But, despite all this I can have one rough night or night out (alcohol free, home for 1/2am) and you can guarentee my body will be telling me off!
Sorry for the major post, as you can imagine it is just such a relief to find someone else in the same situation as me and to know what it's like to have to re-adjust your entire life around something which everyone seems to either misunderstand or dumb down!
It sounds as though you have also had your own obstacles to overcome since your diagnosis but if I can tell you anything it's this; you know what your body needs...and only you can give them to it. Never mind anyone else (as frustrating as that is) make sure that you look after you and the friends that really care will still be there when you're feeling OK to spend time with the world!
harleycw amy93358
Posted
I hope we here an update from Annabel soon and things are going well.
Amy, did you read my post above. I was also so frustrated as doctors, family, friend and coworkers just have no real information or understanding to realize just how difficult this is. We try to be strong and hide as much of it as we can so they stop just calling us weak and think we have excuses when usually it is much worse then we actually tell people. Anyway, my story turned out quite different and while I'm not sure exactly why, I do think mine was/is due to a food allergy (chocolate) which I now avoid and no longer get any symptoms. It took me a long time to cycle through avoiding all types of possible allergens. Perhaps you should do the same. This means that really you need to eat as simple and basic as you can avoiding allergens for at least a month or two because it really needs to all get out of your system. Then slowly incorporate things in. The good news is that if it is allergy related, the symptoms show up really quick once exposed to the allergy. Of course this is not the answer for most people suffering from HSP, because I now believe it is a wide range of possible causes as it only really describes the end condition your body develops. I wish you much luck in your personal journey because that it what it is for all of us. Nobody can tell us what the cause is or even how to stop it for good. Only from our own studies and trying different things can we figure out what works for us.