feel so unwell

[gwenllian111]

Sorry sorry sorry this is a horrible thread to post, but I don't know where else to turn. I feel so poorly, especially at night with terrible joint pain. My shoulders, wrists, fingers, and hips are all agony and i can't find pain relief to help. Ibuprofen is useless, and so is paracetamol and cocodamol. I'm on dex now (pred substitute), so i\m swollen and puffy (fat). I can't sleep because of the pain, and as soon as i 'over do' it in the day, i'm shattered.
Got a dry cough, waiting for it to get bad enough to be admitted back into hospital.
I'm so tired. I'm 30 years old now, don't feel as if i'm going to make it to next week. I\m so tired of being in pain. I feel awful for writing this because people have it so much worse, so please forgive me. It does get better doesn't it?

[delorisdoe]

It is my experience that the pain of wegeners was the worst part. I understood that the other problems it caused me were the ones the doctors cared about and the joint pain was just a symptom but all I can tell you is there in my opinion NOTHING worse than waking up day after day after day to pain. You wake up and feel not too bad only to have it be full on a few hours later. Not sleeping due to pain makes the pain worse. I found little relief from any pain meds that I tried. That is actually how I know if my pain is wegeners related or not-advil takes away non wegeners pain. All of this leads to depression and therefore more pain. I was 30 as well when my wegeners pain was at its worse. One hell of a way to live your life. Do not feel guilty for writing this. We are all in the same boat here just different phases. Most of us have at one time or another been where you are and will most likely be there again.

[gwenllian111]

Thank you so much for your words. You don't know what a difference they make. Thank you X

[DEE]

Ive been down the same road with joint pain , were ever part of your body either hurts or feels so heavy.I changed to Tramodal when I was having problems and still use it when OA is particually sp bad. Usually takes about twenty mins to get the full effect .
I use extra pillows at night to suppport the worse joints .that gives some relief.
Hope you can find some thing that helps you soon. Please take care of you , rant away anytime .DEE x

[gwenllian111]

Thanks Dee. Come to think of it when I was in hospital last week I was on tramadol and it helped a lot, but I don't have any at home. I will have to ask the doctor for some when I next go to clinic.
Do you ever find that the pain eases when you're up and around in the day? It's the night time pains that I struggle with so badly particularly.

[delorisdoe]

for me the pain was bad but tolerable while I was at work moving. As soon as i would start my end of day office work the pain would build and I would go home and not move-then it would get worse. What options do you have when flaring other than prednisone or other steroids? Since my initial 3 year flare up of wegeners I have only had smaller flares that prednisone does seem to chase away. I would imagine at some point steroids may not be enough for you so what hapens then.

I totally hear you on the "I will wait for my cough to get bad enough to be admitted to the hospital". This has been the story of my health for the last year. At least in the hospital I can do nothing and not be looked down upon.

[gwenllian111]

I don't know what will happen when the steroids aren't enough (they aren't now). I suppose, it would be a matter of having plasma exchange, and cyclo again - but with doctors help to manage the horrendous side effects that I get. That I imagine would be worst case scenario. Before that, I guess I would be given 1g pred infusions to see if that would work maybe? I've never known pain like this in my life before, even when I was in ITU with lung and kidney failure. It worries me that if my joints are this bad now, what is lurking around the corner next.....

[gwenllian111]

. At least in the hospital I can do nothing and not be looked down upon.

here here, I totally know what you mean.

[Chris G]

I'm so sorry you're struggling so badly Gwen. When is your next appointment at the clinic? Can it be moved up? My doctor is wonderful by phone when I need something in between appointments. It sounds like you should give your docs a call.:hug2:

[delorisdoe]

Oh, so you can take cyclo. Were you on it for a long time before? I am curious about your side effects too. It does sound like you are headed towards some sort of relapse and that sucks but at least they know how to treat it and how to treat the side effects.

[MCC]

I'm really sorry you are in so much pain. Hugs x

[Sangye]

I'm so sorry, Gwen. I've had that kind of joint pain and it is unbearable. It usually indicates highly active Wegs. Also, when my lungs were fully hemorrhaging I only had a dry cough. I'm worried about you. It doesn't sound like things are under control at all and that they're trying to manage it only with pred. :sad:

[gwenllian111]

I've been on cylco since I was 14 years old, but as I got older, the side effects became of an allergic type. I have serious nausea, diorreah, high temp, inflammed heart and lungs, and liver failure - which sounds horrendous, but I suppose they would use it again if it was a matter of life or death. Very last resort though.
Thanks Chris - I just sent the hospital secretaries an email asking for the doctor to leave a prescription for tramadol for me to pick up at some point throughout the day. The lack of sleep due to pain is strating to get me down a bit now. Also, I was thinking of asking to be referred to a physio or occupational therapist for help with aids. Does anyone else have aids to help, ie. walking sticks etc?

[gwenllian111]

I'm so sorry, Gwen. I've had that kind of joint pain and it is unbearable. It usually indicates highly active Wegs. Also, when my lungs were fully hemorrhaging I only had a dry cough. I'm worried about you. It doesn't sound like things are under control at all and that they're trying to manage it only with pred. :sad:

Hi Sangye, that's what I was worried about was a huge flare lurking around the corner too. My cough is up and down at the moment, but I dread the moment when I hit to point of no return, if you know what I mean.

How are you?

[pberggren1]

Gee Gwen, this is very serious. It sure sounds like a flare to me. I would get to your main hospital where your Wegs doc is right away. This has to be addressed now.

[gwenllian111]

I'm seeing my gp this morning, hopefully rheum at some point this week. thank you so much for your kind replies, it really really helps and I don't feel so alone.

[DEE]

Thanks Dee. Come to think of it when I was in hospital last week I was on tramadol and it helped a lot, but I don't have any at home. I will have to ask the doctor for some when I next go to clinic.
Do you ever find that the pain eases when you're up and around in the day? It's the night time pains that I struggle with so badly particularly.
Hi Gwen
yes I take mine first thing and it gives me some relief throughout the day and then I take again an hour before bed . In answer to aids question I use a walking stick ,would not go far without it .

[Psyborg]

I hope your doctors are able to figure something out for you as soon as possible. I think the not knowing part is almost as bad as the pain sometimes, like the anticipation of waiting for the other shoe to fall. I hope they can figure out some immuno suppressant that will work for you :(

[Sangye]

Gwen, please never feel alone. Remember that you can post on here day or night and someone will reply. And you can always PM me.

I wish I could be there to whisk you to your doctor's office and tell them, "DO something for this woman!" 'Cause you know if anyone could get them to listen, it would be me. :wink1:

[watersedge]

Sorry for all your pain, you are so young and have had this for such a long time. You should go to the hospital and refuse to leave until they do something and listen to how it is affecting you. Hope you find some relief soon.

[Jack]

It sounds very much like a Wegener's flare to me and if this is the case no amount of pain suppression is going to be of much use. If not treated, it will get worse.

My own first symptoms occurred at the age of 30 and the sinus and joint pain prevented me from sleeping. I eventually reached the point where I told my doctor that I could not take any more and was giving up! Never be afraid to post about your troubles on here, many will understand completely and may be able to give advice or at least moral support.

[gwenllian111]

Thank you Jack.
I have been on oramorph, tramadol, and codeine but nothing helps with the pain and swelling. I can't sleep, and I can't get my wedding rings off my fingers they are so swollen and painful. The thing is I can't turn up at the ER with joint pain, I have to wait until my cough gets too bad or something first before I can get help. This is rediculous. I feel as if i'm living my last moments at home. Ive sent my poor husband out to watch the rugby for a few hours, I don't want him to have to be my carer.

[pberggren1]

This is ridiculous Gwen. Is there not another way to get help? Can't you contact your Wegs doc directly?

[delorisdoe]

My wegs docs do little for the joint pain. It is a symptom of returning wegeners for me and it is the part of this disease I hate the most but if it is the only symptom I have then I am rarely treated for it and we just wait and see if it slips away or if the wegeners returns completely

[gwenllian111]

that's interesting. Whenever i've had a flare up before, i've never experienced joint pain before. I did wonder if my kidney function had been affected because of the amount of swelling and odema i've had, but that may be because of the steroids or general inflammation and my legs and ankles aren't swollen - only my face and hands / fingers. What happened to you afterwards?

The NHS doesn't operate on weekends unfortunately, unless on an emergency basis. Will chase rheum up on Monday (if I can last that long). I feel like a bomb waiting to go off!

Jack - would you say your WG has got a lot worse as you've got older?

[delorisdoe]

I have had no kidney involvement so my joint pain has never been because of that but I would be concerened if i were you. They do test my kidneys when I have joint pain but so far nothing.

[Sangye]

Gwen, why can't you go to the ER and ask them to page your doctor? Surely he can be reached on the weekends-- or whoever is covering for him.

[elephant]

Gwen, sorry you are feeling so bad. I agree with everyone above. I ended up in the ER because my joint pain was so unbearable that I could not take it and could barely walk. When your unable to live like a human being , you need to get some relief. My Wegeners was flaring big time!

[jola57]

Gwen, I am so sorry for your pain. I remember how horrible it was, it's what finally convinced my docs to give me 50mg and not 12 of pred. With cyclo the pain subsided in a couple of weeks. When I went to the ER with the joint pain, swollen and red joints, all they did is tell me that as I am on steroids (I was on 12mg at the time) I should just take some NSAIDs. Grrrrr, if I knew then what I know now, I would demand a shot of high dose of pred. I am lucky that I have no side effects to any of the meds. but I have had my kidneys start to fail recently. Gwen, what was it that put you in remission the last time? I know how badly you react to cyclo, but if your flare gets out of control, it may be worse than before. I do hope you will somehow get thru this weekend and see your rheumy on Monday. I will think of you and send good thoughts your way. Keep well and visit often. Hugs.

[drz]

Is going to an urgent care care center an option? How about asking for a referral to a pain clinic for help with pain?

[gwenllian111]

Hi guys
Just to update you, I saw Rheum today and they think I have Relapsing Polychondritis as well now, which as I understand, is where the joints and cartalidge is affected too. Increased steroids, same medicinal routine as WG. Another branch of the same tree I think X

[RCOSSIO]

GEE....another AI disease, isn't WG enough. Talk about being in a household with a bad marriage, WG and Polychondritis. I hope you get BETTER, GWEN!

[Chris G]

What are your RP symptoms Gwen? My diagnosis was up in the air for a while.....between RP and WG. Many of the symptoms are the same. But I never had an external ear flare, and they ran 2 Collagen II antibody tests on me. They were both negative. The weird thing is that when my wg flares, I often get costochondritis along with it.

[Sangye]

So sorry, Gwen. What is the prognosis for RP now? I know a few years ago it was not as good as for Wegs.

[gwenllian111]

My symptoms Chris was a weird hearing loss in my left ear (not external) but the eustacian tube didn't react normally. Also, the extreme joint pain and fatigue. Definately new for WG, but I suppose all symptoms are interrelated in a way anyway aren't they?

To be honest, my Rheum doctor hasn't said much to me about it - he's a very hard man to read, and he just says it as it is.

I have no idea about prognosis or anything. I've just been so tired, i've barely been doing anything. I worry about the effect I have on my husband (I don't want him to be a carer :( ) and my children, who are so used to their mummy having a nap for most of the day. Really horrible. This isn't the life I wanted to have lead, but having said that there are people out there who have it SOOOOO much worse. X

[gwenllian111]

The only thing I wanted to mention (that may help others???) was that whenever I had surgery on my stenosis, the pain post op was horrendous and no one knew why it was so bad.... now it seems it could be that the cartilidge in the stenosis area became very inflammed afterwards. ?

[Chris G]

Oh Gwen I'm so sorry you're feeling so poorly. What does your doctor plan to DO about it? Is there a plan yet?

I wanted to add more regarding RP/WG. While the ear a joint pain symptoms may be new to you, what you describe - both ear and joints - are not at all unusual for WG. Unless there are other symptoms, I'm not sure why your doctor is now leaning toward RP. Has he/she tested you for collegen II antibodies? It seems more like your WG is just traveling to new areas in your body. I myself have never had joint pain, but I suspect at some point down the road that I could develop it.

However, eustachain tube dysfunction was one of my very first WG sypmtoms, and it's the most consistent symptom I have. It occurred with both of the most recent flares I've had in the past couple of years. By the time I was diagnosed in November, my ear and mastoids were so filled with fluid, that my ear drum burst. The pain from the pressure in the mastoid (and I believe spasms in the eustachian tube) was the most excrucuating pain I've ever felt (yep, right up there with child birth), and it lasted for over 5 days. I lost hearing in that ear for a couple of months, but luckily it has returned to normal since then.

Have you seen an ENT regarding your ear? Clearly I'm not a doctor, but I know now, that if I'd let them place an ear tube in my WG ear (prior to diagnosis), I could have avoided the horrible ear infection and the pain that followed. This seems especially important in your case, if they do not yet have a treatment plan lined up for you. Please pursue this as soon as possible.

I'm sorry I don't have words to comfort you about your family. I've felt the same guilt many times. My boys are 9 and 11, and feel like I've missed out on a lot with them. Where's mom? She's laying down.....again. And now that I'm finally feeling better, I was thinking perhaps I'll volunteer more at school this year. Oh, but wait......I have to worry about my immune system being supressed!!!

I hope that you will press your docs for a treatment plan, and see an ENT soon. Hugs to you.

[Sangye]

I am so sad for those of you with kids. Nothing I have experienced can even come close to that kind of pain. :sad:

[gwenllian111]

Yes i was seen by ENT yesterday. He said my ear eustacian tube didn't look inflammed (wg) but flat - so when he went to discuss with my Rheum, they came up with this other potential diagnosis (need biopsy to confirm apparently).

Still, i'm so anxious about it - have no idea what this means.

Meanwhile, still struggling with pain and this annoying dry cough where I have coughing attacks (lying down) and coughing up green plugs (sorry tmi). Not like sputum, but proper green plugs. Horrible!

Keep dreading the next hospital admission, or am I just being paranoid? :(