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View Full Version : Hello I'm new and I feel alone with Lupus!



panda_lupo
01-24-2011, 11:12 AM
Hello! Im panda i was diagnosed with lupus last year in Feb 2010! Thats when my whole world had changed. There was a name of what I had and a name and that had meanings and no meanings at the same time.

Right now I'm feeling very alone! I'm home sick today going through a mini flare up couldn't sleep at all, along with hot flashes, tummy problems and stiffness. I called in to work and they didn't sound to please! why would they right? and yes they do know about the illness and they are waiting on my doctor to fill out these forms they require. But of course the forms are not filled. So i can understand why they dont get it. But I feel like im on prosecution and that i should feel guilty.

I have found this website in hoping that I can connect with people who feel the same.

tgal
01-24-2011, 11:18 AM
Hi Panda! Welcome to WHL! We are so glad that you have found us. This place is for people that feel just like you. We have all been there. I was so thankful when I found this place because finally there were people who understood how I felt. Please make yourself at home and look through the old threads or start new ones if you wish. I look forward to getting to know you!

Angel Oliver
01-24-2011, 11:52 AM
Hi Panda and welcome.That name means so much,as yet i still wait.So i hear ya.Just hang in there and chat to all the members here.We all understand what you are going through and know its a lonely illness at times.So always pop here....many will support you and i so understand how it makes you feel when you feel so sick and work and they dont understand at all.Dont let that hurt you...ive been there.Just take it slow...you have us now.
love
Amanda.xxxx

panda_lupo
01-24-2011, 12:09 PM
Thank you Mari and Amanda! Just chatting with you lot! has been a break through I'm glad we have these sites

~LUVMYFLOWERS~
01-24-2011, 01:59 PM
Hi Panda,
And welcome to our wonderful family!!!!!! You are never alone when you are here
at WHL!!! Hope you feel better soon! Diane,

debbie-b
01-24-2011, 02:55 PM
Hi Panda,

Welcome to WHL, it is the best place to be, when you have lupus or other AI problems.
You will find out very soon how nice everyone is.
If nobody in your world understands you and your disease, WE ALL DO.
Now if you have questions, just ask. Remember we are here for you.

Debbie

rob
01-24-2011, 06:48 PM
Hi Panda,

As you can see, you are not alone! There's always someone here. I was diagnosed with SLE back in 2004. There's no need for you to feel guilty-we didn't ask for this illness.

Anyway, just wanted to say hello, and welcome to our group!

Rob

slim
01-24-2011, 10:32 PM
Hi Panda

You have found the perfect place to go to when you need to vent, find out how others are doing with certain meds and just somewhere everyone understands what you are going through. This is a good site to post any question concerning Lupus and someone will come along to answer you. Im slim and I have been diagnosed going on 6 years now and these last two have been rough. Working while haveing lupus is tough especially when you are going though a flare so hang in there and listen to your body, with lupus we dont necessarily look ill so others just dont get it. Sorry to hear you are home sick and going through this alone because a good support system make the whole process a little easier, so let the friends you make on this site your support team. Feel better .Slim

GoodDog
01-24-2011, 11:33 PM
Hi Panda, I understand what you mean about feeling alone. I'm new to this site and already feel at home and making some connections. Sometimes I come across stronger than I am just so people won't know just how lonely I am. It's a terrible disease but being amongst people that understand and while suffering are still reaching out to help others is heartwarming.

Nonna
01-25-2011, 01:56 AM
Hi Panda, I know how you feel. I'm ever so glad that I found this site just over a year ago. Everyone here is great and we are here for each other.

As for working and having Lupus, that's what I do. My pain tolerance is high; so if I have a mini flare; I'm at work. I have a high back chair at my desk and am constantly putting my head back to rest. I force myself through the day. Afternoons are the worst.

Anyway you've found s new home with our family
Welcome,
Nonna

Peridot_Gem
01-25-2011, 08:21 AM
Hello Panda,
Welcome to the WHL and we all know what your going through and it can make you down some people cope better than other's.

At the moment i'm like yourself with flares, joint paints, stiffness and stomach trouble and my god it can get you down but they're wonderful people on here and will help in which ever way possible, so your not alone on this one and don't ever feel like you are.

There's loads of threads which may help you in different degree's refering the symptoms and it will be nice getting to know you.

Terri xxx

panda_lupo
01-25-2011, 10:36 AM
Thank you all! Your words have so much meaning to me! you have no idea how great it is to find a home here! Thank you!!

You are all so welcoming and I hope we can make stronger connections and grow together!!!

Thank you from the bottom of my heart!

Peridot_Gem
01-25-2011, 10:47 AM
Hello Panda,

Your welcome mate and that's all we're here for is to give one another full love and support.

Terri xxx

~LUVMYFLOWERS~
02-02-2011, 07:27 PM
Hi Panda,
Just stoped by to say i hope you are felling better!!
Gentle Hug's Diane,

kim,l
02-02-2011, 11:40 PM
hi panda welcome to whl hope you are feeling better hugs kiml

Peridot_Gem
02-04-2011, 08:45 AM
Hello Panda,
How you feeling now, abit better i hope but it never ends from one day till the next.

Have a nice weekend the best you can anyway. Luv Terri xxx

Angel Oliver
02-04-2011, 12:10 PM
Hi Amanda,

Im also popping by to see how you are?

Love
Amanda.xxxx

mrstjscott
02-04-2011, 01:32 PM
Hi Panda,
Unfortunately, this disease does make us feel lonely sometimes. I have been living with Lupus for 2 years (diagnosed). Our disease is so complicated, but like the others have said, this is a great site to come to because people really listen because they understand. So, I really hope you feel better and don't feel so lonely. The people on here are great and just reading their advice and comments to others can often help when feeling lonely.
Welcome to WHL.

panda_lupo
02-08-2011, 11:10 AM
Hello Wonderful People!!
Thanks for checking in on me!! Much appreciated!!!

Right now its a ten day countdown till I see my doctor, this is my first Flare up thats lasted more than a couple days. Its going slowly I’m still going to work and trying to keep on on things but it is difficult. As I’m sure you all know!

I started back on my plaquniel and I find the side effect to be really hard at times. I figured out a way to take it in the morning so while at work if I get the stomach pains the bathroom not too far. I was trying to take Pepo to calm the tummy troubles but then I got the Black Hairy Tongue side effect from that :( but I’m determined to get through two weeks of taking Plaquniel to see if it helps! I picked up on staying away from anything spicy, coffee or drinking. I’m taking the pill with milk and food.

Does anyone have any tips on how to calm down the side effects?

tgal
02-08-2011, 11:25 AM
You might want to try one of those 24 hour heart burn meds (prevacid or something). I have GERD and I have found that those really help keep my stomach calm with all the meds

Peridot_Gem
02-08-2011, 04:13 PM
Hello Wonderful People!!
Thanks for checking in on me!! Much appreciated!!!

Right now its a ten day countdown till I see my doctor, this is my first Flare up thats lasted more than a couple days. Its going slowly I’m still going to work and trying to keep on on things but it is difficult. As I’m sure you all know!

I started back on my plaquniel and I find the side effect to be really hard at times. I figured out a way to take it in the morning so while at work if I get the stomach pains the bathroom not too far. I was trying to take Pepo to calm the tummy troubles but then I got the Black Hairy Tongue side effect from that :( but I’m determined to get through two weeks of taking Plaquniel to see if it helps! I picked up on staying away from anything spicy, coffee or drinking. I’m taking the pill with milk and food.

Does anyone have any tips on how to calm down the side effects?Hello Panda,

Yes we all know what your going through mate, there's disputes on me at the moment about plaquenil and going on it because i have seizures, what have been the worst side affects for you if you don't mind me asking, as you can look it up but it's always better to hear it from the horses mouth as our sayings go.lol [no offence taken i hope]

Well i do hope your stomach troubles can ease eventually but i look forward to hearing off you about side affects just incase they let me have it.

panda_lupo
02-09-2011, 10:28 AM
Hey Terri,

The worst side effects would be diarrhea, dizziness, nausea and the random stomach pains. So far the diarrhea is the most inconvenient part cause of work and traveling to work! I pray I can make it a bathroom or hope I don’t get stuck on a train delay. I’m looking into buying a backpack to leave at work with a change of clothes because I have had accidents (embarrassing).

Peridot_Gem
02-09-2011, 10:39 AM
Hello Panda,
I hope you've been ok today mate, i've just had the usual painful spasm in my leg and it's been hard to move, ended up taking paracetamol the trouble is they take up to 4hrs before i feel any benefit.

Well i bet you do find it hard with that lot, the nausea and stomach pain won't be an added bonus as i go through that lot all the time but refering the diarrhea god knows if i'd be able to cope on that score, Marla mentioned that to me how bad it is and your right in what your saying about an accident that would be embarrasing, i can't cope with diarrhea if it hits me out the blue for no reason and that's just one day of it.

My husbands concern about me starting it is because i'm just 9st now incase i go to far with my weight.

Thanks for letting me know mate and all the best with what your going to do.

panda_lupo
02-22-2011, 10:54 AM
Hey Guys!

So an update on my condition!! I went to the doctors and told him about the new sensation in my left hand (thumb & Index Finger) and he had no clue! He said he have never seen something like that before and that maybe wait it out and see if it just goes away, so here's hoping it does.

So I was wrong on how i was treating myself! I was so concerned with the Lupus that I forgot to concentrate on my second condition fibromyalgia. I heard they call this disease the "rumor disease" and that it’s all in the mind. I need to get the fibromyalgia under control first and for most and I understand that a healthy diet and Working out will help!

Does anyone else have any advice on how to handle fibromyalgia?

Peridot_Gem
02-22-2011, 12:49 PM
Hello Amanda [i'm hoping it's amanda.lol],

I am sorry to hear the doctor was unable to help you with your fingers but never forget other conditions mate although the lupus can take you over quite abit.
I've not been diagnosed with fibromyalgia but someone will come along with advice and thanks for updating we and all the best mate.

Terri xxxxxxx

Peridot20_Gem
03-09-2011, 09:53 AM
Hello Amanda,
Hows your health now mate and i do hope your fibromyalgia is'nt so bad, well i always hope symptoms ease for we all from time to time, it can be a nightmare. They started me on the plaquenil like yourself 5wks ago and it's affects are kicking into my symstem quickly, stomach pain all through the day like a cramp form, nausea more now and i've noticed my bowls feel loser and if i eat i'm definitely at the toilet afterwards.

I found this info below on your condition about Fibromyalgia from a medical site and i hope it helps mate. Love Terri xxx


Currently, there is no cure for fibromyalgia. But there are many steps you can take to understand your condition and manage your symptoms. Treatment is focused on managing pain, fatigue, depression, and other symptoms common in fibromyalgia in an attempt to break the cycle of increased sensitivity to pain and decreased physical activity. Every person may respond to a different combination of treatments.

Treatment may include:

•Medicines to help you sleep better, relax muscles, or relieve muscle and joint pain. Medicines your doctor may suggest include tricyclic antidepressants, SSRIs, SNRIs, muscle relaxants such as cyclobenzaprine (Flexeril), anticonvulsants (also called antiepileptics) such as pregabalin (Lyrica), mixed (or dual) reuptake inhibitors or, less often, nonprescription pain relievers.
•Exercise therapy to relieve sore muscles and increase energy.
•Cognitive-behavioral therapy to help you learn to manage your pain.
Home treatment is also a vital part of managing fibromyalgia. Your efforts to get regular exercise, improve your sleep habits, and reduce stress are as important to your treatment as any medicine your doctor may prescribe.

Initial treatment
If you have just been diagnosed with fibromyalgia, your initial treatment goals might include:

•Starting a program of regular physical exercise. Getting consistent exercise, especially cardiovascular exercise, is one of the best ways to manage fibromyalgia. Pool exercise has been found to be particularly effective for many people.3 It's important to progress your exercise program slowly so you don't get sore muscles that cause you to want to stop exercising. Working with a physical therapist familiar with fibromyalgia may be helpful.1
•Identifying sleep problems, if you have them, and learning about ways to get more restful sleep.
•Relieving pain and stiffness with medicines and heat.
•Identifying "triggers" that seem to make your symptoms worse and learning to avoid or manage them. A trigger can be anything you've noticed that increases your symptoms. Triggers may relate to the weather, particular activities, stressful events, or lack of sleep.
•Starting a program of cognitive-behavioral therapy to help you learn to relax, reduce stress, and manage your pain. This can help decrease pain and fatigue. And it can improve your mood and help you function.3
With some guidance and instruction, you will be able to start working on most of these goals at home. You may have a team of health professionals to help you. The team may include your family medicine doctor, a rheumatologist or endocrinologist, a physical therapist, and a psychologist.

Ongoing treatment
Exercise, sleep, and stress reduction can be extremely helpful in controlling your symptoms. Symptoms of fibromyalgia come and go repeatedly, so it is important to keep doing home treatment over the long term.

Prescription medicines can help certain symptoms, including pain and sleep problems. Talk with your doctor if you think the medicines you are taking do not help. There may be other choices. Remember that your need for medicine may change over time.

Another important part of ongoing treatment for fibromyalgia is, when possible, avoiding or limiting your exposure to "triggers" or "stressors" that make your symptoms worse. Cold or damp weather, poor sleep, fatigue, physical or emotional stress, and overexertion seem to be common stressors for people with fibromyalgia. It may not be possible to avoid these things completely. But you can learn ways to reduce stress, practice better sleep habits, and avoid overexerting yourself.

Watch for signs of depression or anxiety. They are common in people with fibromyalgia and can make problems with sleep and feelings of pain even worse. These can often be successfully treated as long as you recognize them and discuss them with your doctor.

Many people with fibromyalgia have other joint or muscle diseases (such as rheumatoid arthritis or lupus) that need to be treated too. Make sure you tell your doctor about new symptoms or problems that get worse.

Treatment if the condition gets worse
Fibromyalgia is not a progressive disease and causes no permanent physical damage. But the symptoms can be debilitating. And there may be periods of time when you feel worse than usual.

If new symptoms develop or if existing symptoms get worse, talk to your doctor. He or she may need to reassess your treatment. Your doctor may need to adjust your medicines or prescribe different ones. Or perhaps you are exercising too much or not enough.

It's also possible that new symptoms or symptoms that are worse could be related to something other than fibromyalgia. Your doctor can evaluate this possibility if you let him or her know that you are having problems.

What To Think About
Exercise seems to help most people with fibromyalgia, but no one particular treatment stands out as the most effective. The kind of treatment you need or want may be based on:

•How bad your symptoms are.
•Whether the condition is disrupting your daily life.
•What kinds of changes in your life you are willing and able to make.
Because the symptoms of fibromyalgia can come and go, you may find it difficult to judge whether a particular treatment is really working. Different people may respond differently to each type of treatment. It can take time. And you may have to try several different treatments to find an approach that works for you.

panda_lupo
03-25-2011, 12:32 PM
Hello!!! Update on my progress!
Terri! Thank you for that information!!! I appreciate it and it definitely helps put things in perspective!!

So it’s been almost two months since I have been on Plaquniel and so far the stomach side effects have subdue, thou once in a while it will act up and the toilet and I have lovely reunions ha-ha! I have gained a lot weight in the first month so I have changed my diet with a help of a dietician and it seems to be making a huge difference.

I’m trying to develop a exercise and sleep routine but my low spoon days are hard to work around and I’m a perfectionist so if I’m not sticking to my routine I get pretty down and stop it completely, which is wrong! So I’m learning to do my sleep routine first and then incorporate exercise. I can honestly say it’s challenging but fun to see how far I’m going to go.

Thanks for your support!!!!

lovehubby
03-25-2011, 12:42 PM
I hope that you know you are not alone. when ever you feel down just get on WHL and talk you will get a response. I know and understand how you feel we all do. It really helps to talk to people that can relate to you. Take Care

Bonita
03-25-2011, 02:10 PM
Welcome from me too. This site has been a God send for me . I had so many questions and felt alone but the people here are wonderfull and will go out of their way to help you. Bonita

Peridot20_Gem
03-26-2011, 11:42 AM
Hello Amanda,

How are you feeling now in yourself??.... i hold my head up to a large majority of the member's including yourself who have stuck with plaquenil.

Amanda i don't know if it's my body that can't cope with the side affects of the plaquenil with it being mixed with my other drugs, as the affects of the plaquenil have got stronger in the last week or if it's me mentally but come monday i shall withdraw from the plaquenil slowly.

What's annoying me the most also is an harsh rawness to my tongue and all i keep tasting is a form of metal and drinks don't seem the same either and it's causing me not to get enough liquids for the sjogren's and systemic lupus i have besides other affects it's giving me.

Hugs Terri xxx

serand4
03-26-2011, 01:36 PM
Welcome, welcome!!! I can't go a day without checking in with my Lupus family. There is something so warm and reassuring about that invisible hand to hold when the flares flash up or you're given information you just can't understand at that moment. Sometimes I'll read through new posts and there will be something I've been struggling with and this other person has found a way to handle it and now I can! It's a bit like having your prayers answered via email! Please make yourself at home and all questions, comments and thoughts are welcome. WHL has been a crash course in Lupus for me, far better than all the dedicated info sites combined. These are real people, dealing with the same issues and frustrations. We may not be able to cure you but we sure can empathize and love you!

Peridot20_Gem
03-26-2011, 02:56 PM
Susan,

Well said mate and it's the best thing i ever did joining, even though my hubby found the site.
It helps me a great deal to let loose with what i've got on my chest and someones always there to help.

Brilliant site and family besides fab friends xxxxx

Toradoradi
03-26-2011, 09:22 PM
Welcome! I just joined the site a few weeks ago and already feel better about everything! People here are very welcoming and it's nice to have a place to write your concerns, fears, emotions.. It's nice to have people who understand and can be there and offer their words and wisdom! Hope this site makes you feel less alone!

Peridot20_Gem
03-28-2011, 05:11 PM
Welcome! I just joined the site a few weeks ago and already feel better about everything! People here are very welcoming and it's nice to have a place to write your concerns, fears, emotions.. It's nice to have people who understand and can be there and offer their words and wisdom! Hope this site makes you feel less alone!I know just how you feel, it did wonders for me joining last year and to open up to member's already suffering the same condition really helped me a great deal and still does because i think i'm a stuck record with my husband.lol xxx

tgal
03-28-2011, 05:16 PM
I think that is how the majority of us feel! This place is an emotional savior for many, myself included. I love hearing everyone's thoughts, how they cope, what is tearing them apart, whatever. I really do love this place and I, for one, love this WHL family!

Peridot20_Gem
03-29-2011, 06:26 AM
Well Mari,

I know mentally i could never leave the site, getting to know such lovely member's and like yourself it's my second family besides my hubby, thank god he found the forum for me, as i was so desperate at the time when i joined as you very well know.

panda_lupo
03-30-2011, 09:47 AM
Hello everyone!

I couldnt agree more! i have found a new family in this website with growing members! and Im loving every minute on if it!

Terri!
in response to your question about how i feel myself is i dont know to be honest! i have my good days and bad but mentally i feel better and that Its a slow process and that hopefully with the new diet and excerise plan i start feeling a huge difference.

Peridot20_Gem
03-30-2011, 12:01 PM
Hello Amanda,

It's nice to hear that you feel mentally better, i wished i was like that i feel like i'm going down ill for some reason my mental state can't get to grips with the pain etc, like i did with my seizure's and other things, it makes me baffled myself sometimes but your right in what you say it's definitely a slow process.

Well i do hope the new diet and exercise plan works out for you and that you've not been to bad today hopefully.

Hugs Terri xxx

steve.b
03-30-2011, 06:58 PM
in response to your question about how i feel myself is i dont know to be honest! i have my good days and bad but mentally i feel better and that Its a slow process and that hopefully with the new diet and excerise plan i start feeling a huge difference.

please try to stay as positive as you are now.
being positive help keep out stress.
stress causes flares.

being positive is good medicine.
i am interested in hearing about your exercise program.

Saysusie
03-31-2011, 11:54 AM
WHL FAMILY;
I can't tell you how wonderful it is to hear that so many of you have found WHL to be a place of genuine care, love, concern, and support. Conrad and I envisioned such a place many years ago and, with the help of so many members like each of you, it brings tears to my eyes to know that we have accomplished our goal.
Please know that WHL will always be a place where judgement does not exist, where every feeling is honored, and every emotion expressed is valued.
Thank You..WHL Family

Peace and Blessings
Namaste
Saysusie

Peridot20_Gem
04-02-2011, 08:13 AM
please try to stay as positive as you are now.
being positive help keep out stress.
stress causes flares.

being positive is good medicine.
i am interested in hearing about your exercise program.Hi Steve,

I have a right game coping with it mate due to my manic depression with does'nt help in leaps and bonds as that comes and goes like mad, then i start pouring my heart out and just feel lost with it all.

panda_lupo
04-02-2011, 12:32 PM
Hello! Steve,

Your right in staying positive! but even that wears me out too ha-ha! its seems in stuck in between a rock and a hard place

The exercise program is designed to help keep the the Fibromyalgia at bay, I do Hot yoga for stress relief and then alternate between full body workouts and arms. along with a a gluten free diet and low beef intake.

Been on it for the last two weeks and its been going pretty good. I just need to learn to drink more water and create a better sleep routine.

hope that helps!

Peridot20_Gem
04-04-2011, 10:09 AM
Hello Amanda,

I'm stopping on the plaquenil for another 2mths and hopefully i can get my head around it, as i was seeing benefits from the drug but mentally wise as you know i was'nt coping to good with the side affects but thinking strongely today if i can cope with other troubles of my other medication's, i can beat this one because i can't carry on with the severe pain i've got as it drives me mad.

Lastnight i broke down again crying in my hubby's arms and told him i can't cope no more, feel like i'm in a nightmare half the time and i do apologise for going on but i feel so stressed out.

~Hugs & kisses Terri ~

panda_lupo
04-04-2011, 09:45 PM
Oh terri!!! we are here for you and dont worry about going on and on! i love to listen and hope i can help in someway!

Im sorry you have to stop plaquinel, i keep wanting to believe that this new drug may be a saviour and help in all ways!!!

KEEP YOUR HEAD UP LOVE!!!! WE are here for you!

Be strong!!!

tgal
04-05-2011, 09:12 AM
Terri,

I would talk to your doctor before starting on the plaquenil again. You said you had really bad side effects so you really don't need to do that to yourself. Maybe they can give you a different med that doesn't harm you like that one.

Keep us posted

Peridot20_Gem
04-05-2011, 11:20 AM
Oh terri!!! we are here for you and dont worry about going on and on! i love to listen and hope i can help in someway!

Im sorry you have to stop plaquinel, i keep wanting to believe that this new drug may be a saviour and help in all ways!!!

KEEP YOUR HEAD UP LOVE!!!! WE are here for you!

Be strong!!!Hello Amanda,

Thanks for the support mate, it's really appreciated but i am going to stick with it another 2 months and try my hardest and it's so lovely to have the support of my second family.

Love Terri xxx

Peridot20_Gem
04-05-2011, 11:28 AM
Terri,

I would talk to your doctor before starting on the plaquenil again. You said you had really bad side effects so you really don't need to do that to yourself. Maybe they can give you a different med that doesn't harm you like that one.

Keep us postedHello Mari,

I'm with NHS Choices and printed off 40 affects which plaquenil can give you while on them besides me having a few i already suffer with off my other meds, i ticked 12 that the plaquenil was giving me and showed it to my doctor yesterday and he checked my heart and lungs before he spoke with me and he wants me to try and do another 2mths and at the end of that we'll decide then.

Mari the only other medication they wanted to give me was presidone and a tablet to stop brickle bones that it can cause [can't remember the name] and when they looked it up it counter reacts with tegretol which i take and there's only plaquenil that suits the rest of my medication.

Well all i can say otherwise is my hubby took me for a meal lastnight, to get me out the home i'd only been back in half hour and i was vomiting it back and half the day i've spent sleeping on the bed.

Cheers mari xxx