Gutted, next rheumy appointment moved

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alim0nkey
Regular Member


Date Joined Feb 2009
Total Posts : 58
   Posted 3/26/2009 10:29 AM (GMT -7)   
Got home tonight to find a letter saying my next appointment with the rheumy is being move back to the end of April. I thought I'd only have another week and to wait and now it's a month. I feel like crying I'm so miserable and in pain. The pharmacist told me the pain killers I got should only be taken for 10 days, so what am I meant to do after that? Think I'll have to make an appointment to see my GP again, not that they're any use either. Sorry for venting but I just feel so miserable. I can't stand being in pain and in limbo like this. I could stand the pain if I didn't have the chronic fatigue on top.

Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 3/26/2009 1:24 PM (GMT -7)   
Oh that is a gut wrenching thing to have happen.  I'm sorry you have to wait another month.  I would definitely see your gp again in the meantime and hopefully they will give you more pain meds.
 
Blessings,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


omega
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Date Joined Jan 2007
Total Posts : 607
   Posted 3/26/2009 3:32 PM (GMT -7)   
Hi alimOnkey,
Is your rhumty appt at a hospital? If so, try to call the appointment phone number and see if they can direct you to speak to a rhumty nurse or move up for an urgent appointment. I am also in UK, and I had times when I was in huge pain. I called in for speaking to a rhumty nurse. Otherwise, next time when you see your rhumty, ask the doc or reception if there is any number you can call when you are in pain or when you have something wrong.
DX SLE 1988; APS (Antiphospholipid Syndrome) Pred 10mg, Verapmil 40 mg bd (for migraine headaches), Cellcept 1000 mg;Omerprazole 40 mg; Warfarin; Calcium + Vitamin D 1200mg, Folic Acid 5 mg; Iron; Simvastin; Oxycontine 10mg; pregablin 150mg


sjkly
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Date Joined Dec 2007
Total Posts : 2113
   Posted 3/26/2009 4:04 PM (GMT -7)   
I would definetly call the rhuematologist he/she may be able to give some advice over the phone or call in a script.

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 3/26/2009 4:31 PM (GMT -7)   
Hey alimOnkey! Sorry you are having so much pain. I and most people on here know how frusterating it is to be in pain and can't get any relief. Don't apologize for venting. Everyone needs to vent and get their feelings out especially when you are having troubles like this. I would also try to call your rhuemy, if they know you are having problems, maybe they have  "emergency" spots available for people that need to see someone quick. I know my rhuemy does but I am not sure if that is normal for rhuemys. If they can't get you in to see him/her, they probably can call you in a prescription. Do you have fibro or lupus or both? Maybe we can give you some suggestions if we know what the pain is from....Sorry if you have already told us, I have a horrible memory!

Amy

 

21 years old...Systemic Lupus 11/07, lupus nephritis 01/09, raynoids 03/08, Carpal Tunnel 03/08

Ultram, Prednisone, Cell-Cept, Lisinopril, Imuran, Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Chantex, Aspirin 81 mg, Vitamin C


alim0nkey
Regular Member


Date Joined Feb 2009
Total Posts : 58
   Posted 3/26/2009 5:08 PM (GMT -7)   
Thanks everyone for your suggestions, its really helpful. I doubt I'll be able to speak to anyone, but the cancellation is a possibility. I will give them a ring tomorrow.

I'm currently without diagnosis - I have been unwell for a year now, major symptoms started last July with numb fingers. I had ANA blood tests and tested positive at 1:640, but back then didn't have that many symptoms. Now I have numb hands, numb feet, numbness in neck, pins and needles, pain in feet, sort of 'electric' pulse type feelings in my legs, ulcers in nose and mouth, rash on chest and neck that looks like sunburn, near permanent headaches. Neither my GP nor the rheumy would prescribe anything as I am without diagnosis. 3 weeks ago I had follow up blood tests (7 of them in total), and being tested for 'something auto immune'. The last two months I've been in more and more pain, on Monday I went home from work in tears and could barely move. I went to see a pharmacist at a local chemist to see what the strongest pain killer/anti inflamatory was I could get without prescription as over the counter stuff wasn't working. I got a high dose ibuprofen and it's helped a bit but I'm not supposed to take it for more than 10 days. I usually have a nice warm bath to get rid of aches and pains, but I can't stand the feeling of hot water on my hands and feet, they kind of feel scalded. I feel like a wreck and I'm only 36!

AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 3/26/2009 5:09 PM (GMT -7)   
Hey Alim,

So sorry. I actually would be crying. make sure to call and try the suggestions above. But, if they don't agree to get you in any sooner, ask if they would put you on a cancellation list. Tell them you'll drop whatever you are doing when they call and make yourself available on short notice. Sometimes you can get in sooner that way. Meanwhile make sure to take pictures of any rashes or mouth sores, ok? That might be helpful on appointment day if your skin issues have disappeared.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


alim0nkey
Regular Member


Date Joined Feb 2009
Total Posts : 58
   Posted 3/27/2009 8:46 AM (GMT -7)   
Rang my GP this morning and have an appointment on Monday morning. Still have a load of ulcers in my mouth - had them for a week now. Whenever I get anything like that it seems to take forever to heal. I'm so glad it's the weekend and I can just relax.

alim0nkey
Regular Member


Date Joined Feb 2009
Total Posts : 58
   Posted 3/28/2009 3:07 AM (GMT -7)   
Just rang to see about moving my appointment, nothing available. Get this, the clinic I'm going to only runs for half a day once a week, and for the next 4 months, they have 1 spare slot at most for each clinic. Good old NHS. So I'm stuck in limbo, feeling ill like this, and there's bugger all I can do about it. Moreover the appointment they have just sent me is for a day that I wanted to go to a conference from work, so I get to choose between keeping the appointment and watching my career go down the toilet. I'm so upset. I'll just have to see what my GP says, but the last time I spoke to him he just kept saying I'd have to wait until I'd had my tests, blah blah blah.

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/28/2009 7:27 AM (GMT -7)   
((((((((alimonkey)))))))))).  This is so difficult to manage isn't it? It's out of your control.  Getting this appointment will serve you best in the long run.  You can probably go to another conference some other time.  If you don't have your health, you won't ever have a career.  Take care of your body first.  The career will always be here if it's meant to be!  Just my thoughts on this!!
 
XO
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


alim0nkey
Regular Member


Date Joined Feb 2009
Total Posts : 58
   Posted 3/28/2009 8:21 AM (GMT -7)   
Thanks ginny, it's nice to have someone to talk to who understands. I know you're right but I'm just so frustrated. This has been going on for a year now. The last hospital consultant referred me for nerve conduction tests despite the fact that he told me when he first looked at me he thought I had an auto immune condition. That referral wasted months on waiting lists etc, and if it was in his power to refer me for a nerve conduction study, why the heck didn't he refer me on to the rheumatologist when he suspected an auto immune disorder instead of mucking me around sending me back to my GP who then sent me on again. I'm getting passed from pillar to post and it's so upsetting. When I had heart problems 5 years ago, my appointment was delayed 4 times adding nearly 3 months onto my waiting time.

I might make an appointment to see occupational health again - they were the only ones who were even vaguely helpful. Although they did suggest I should go private to get a quick diagnosis, but I just can't afford it, not when my house is like a building site and we're in the middle of major works. Think I need to ring our counseling service at work to because I'm likely to go mad. I'm in pain, exhausted, not getting good quality sleep, over the counter pain killers aren't working and my GP won't prescribe anything without a diagnosis. I'm just so tired.

I guess the reason I'm getting so upset is because it reminds me of my aunty and the shambolic way she was treat. She was in and out of hospital for 10 years, misdiagnosed with all sorts of things from MS, ME, lupus, fibro, to one consultant who told her it was all psychosomatic. Then they discovered she was riddled with cancer and had a couple of months to live at most.
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