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sara akhtar
10-15-2008, 09:10 PM
:cry: I woke up at 1am and my thumb was sooooo painful :cry: It's painful every day but last night it was so bad that the veins in my wrists were standing out and it felt like it was going to dislocate. Does anyone else ever have a sore thumb - it's the one consistant symptom for me - the other aches move around but that thumb hurts me every night! It's 5am and I'm feeling a bit fed up because I had a good day yesterday and a terrible sleepless night of thumb and back pains. Hopefully I'll go back to bed and get another half hour on before I have to get up at half 6.:sleeping:

xx

Saysusie
10-16-2008, 07:48 PM
Often, Lupus can cause a condition known as Peripheral neuropathy. This is a neurological disorder resulting from damage to the peripheral nerves. It may be caused by diseases of the nerves or as the result of systemic illnesses, such as Lupus. I am not saying that this is the cause of your pain, I'm just giving you information about the condition as it can cause the type of pain that you are describing.
With Peripheral neuropathy, the nerve damage can cause sensory changes to your toes, feet, legs or hands (particularly the thumbs). Note that Peripheral neuropathy symptoms usually refers to various symptoms known to you, the patient, but the phrase Peripheral neuropathy signs may refer to those signs only noticable by a doctor.
The list of treatments for Peripheral neuropathy varies, depending upon the underlying condition, but they usually include the following list.

* Chromium - possibly used for treatment of related chromium deficiency
* Vitamin B1 - possibly used for related vitamin B1 deficiency
* Vitamin B6 - possibly used for related vitamin B6 deficiency

It might be beneficial for you to mention this constant pain to your doctor in order to find out exactly what is going on.

Peace and Blessings
Saysusie

sara akhtar
10-16-2008, 11:50 PM
Thanks for the info Saysusie - it sounds so trivial to have a sore thumb but I can't really describe how painful it gets - then in the morning it just feels sensitive from the trauma of the night before. I have mentioned it to bothe GP and Rheumy so hopefully they will come up with something. I went to have my chest xray repeated Wed as the last one showed a partially collapsed lung - do you happen to know if that is the same as lung fibrosis or pleurasy? I have searched the WWW but can't find out if it's the same thing as either of these. ANYWAY enough of my woes - how are you Saysusie? You are always supporting everyone else - who supports you?

Saraxx

Saysusie
10-18-2008, 09:54 AM
Hi Sara;
I get an immense amount of support from the members here....two in particular who always check on me, write to me and make sure that I am doing OK. Additionally, my husband is extremely supportive, understanding and caring. I have two very dear friends who keep me focused and who are my rocks! Thank you so much for your kind words and for you caring :lol:

Now, for your question. Collapsed lung is a form of pneumonitis (pheumothorax). A collapsed lung (pneumothorax) is a buildup of air in the space between the lung and the chest wall (pleural space). As the amount of air in this space increases, the pressure against the lung causes the lung to collapse. This prevents your lung from expanding properly when you try to breathe in, causing shortness of breath and chest pain.

There are several conditions that can cause collapsed lung or have collapsed lung as a complication, and Pleurisy is one of those conditions. Many Lupus patients suffer from Pleurisy (inflammation of the pleural membrane). Collapsed lung can also be caused by conditions such as chronic obstructive pulmonary disease (COPD), asthma, cystic fibrosis, and pneumonia.

So, there is a relationship between Lupus, pleurisy and collapsed lung. It is probably best that you and your doctor determine exactly what the cause of your collapsed lung is. A minor pneumothorax may only require continual observation by your doctor. However, in some cases, oxygen may be given (through a mask). More serious cases are treated by inserting a needle or a chest tube into the chest cavity. Both of these procedures relieve the pressure on the lung and allow it to re-expand.
Surgery may be needed if the above treatments do not work or if the pneumothorax returns.

I hope that this information has been helpful or at least gives you something to discuss with your doctors. Please let us know if you need anything further.

Peace and Blessings
Saysusie

sara akhtar
10-18-2008, 10:38 AM
Thanks Saysusie

That is really informative - how do you know all these things? I've tried to look at various websites but it's all so confusing. I had a repeat xray on Wednesday and I'm hoping that when I get the results through from my GP there will be an improvement from 6 weeks ago. I'm not so sure though as when the ladies in the xray dept looked at the screen one of them said 'Are you planning to go to see your GP in the next week or so?' but they wouldn't tell me anything of course as it all has to go through the Dr - very frustrating! Oh well we'll have to wait and see. I only get breathless when I talk a lot - hahaha must be trying to tell me something :lol!:

I'm glad you are so well supported Saysusie - you spend so much energy on others that you really must take care of yourself too :)

Have a great weekend.

Saraxx

Saysusie
10-19-2008, 09:06 AM
Thank You Sara. Please make sure that you let us know how your doctor's visit goes and what the results of the X-ray were.

In order to answer questions asked on these forums, I spend many, many hours researching. Since I've been doing this for so many years, I have managed to retain a lot of information and am able to answer some questions off the top of my head. Otherwise, I devote my time to finding information and answers. That is the purpose of the website and that is my primary mission.

You've probably noticed that many members here are also quite knowledgeable and are very willing to provide detailed information and useful answers. I am so proud of this board and the members here. I had a vision for WeHaveLupus and the members have helped me to realize that vision and to continue to be a safe place for Lupus sufferers as well as for anyone suffering from any form of auto-immune illnesses.

Peace and Blessings
Saysusie

sara akhtar
10-19-2008, 10:52 AM
Saysusie,

You are doing such a fantastic job here - you only have to see the quick response people get to their questions to see that. I have already learned loads just from browsing around and also from the info you and others have provided me with. If it turns out that I don't have Lupus I still intend to keep popping by for a chat with my new-found friends - hope that's OK? I do have hypothyroidism so I hope that qualifies me in the auto-immune category :D And anyway I can't leave now because I'm excited to see my title keep changing :rofl:

Keep up the fantastic work - we all appreciate you sooo much :)

Saraxx

sara akhtar
10-19-2008, 10:59 AM
PS Saysusie

I intend to only have a very very minor pneumothorax - no-one is going to want to stick a needle into my chest as I'm the world's most bad-tempered patient :x I'm the one they discharge early when they need an extra bed :oops:

x

sits_inthe_corner
10-19-2008, 11:59 AM
Hugs Sara,

Sorry you are going through this :( .

I'm the patient they get rid of cause I'm having too good of a time. I'd be in such pain that I couldn't sleep no matter what they gave me. So I'd sit up with the happy gang in the patient lounge and play poker all night.

:lol: They moved my butt off the floor for being a disruptive influence...can you imagine? Me? Disruptive?

sara akhtar
10-19-2008, 12:15 PM
Hahahaha that is such a great attitude to have :lol: I'm ashamed of how I act in hospital - it is so out of character for me - I just don't know what gets into me :oops: I just feel that I have to tell everyone how to do their job and then complain that they're still not doing it right :roll: Plus I cry as soon as they say get on the trolley if I have to go to theatre :shock: And God help them if they try to get me to count backwards while they put me under - I just shout at them for being so patronising :oops: As you can imagine they can't wait to put me to sleep to get some peace and quiet :lol: Even more embarrassingly, I start all over again as soon as I come round :evil: Then I insist on having the curtains shut around my bed so I don't have to interact with anyone - then have the cheek to complain that the nurses aren't being attentive enough :roll:

I think it's about wanting to be in control of our own bodies - you probably act like you do for the same reasons don't you? You probably rebel because you want to make your own rules. Aren't human beings strange creatures? Oh well, maybe we'll wake up tomorrow and a miracle will have happened - like the aches and pains will have gone, I'll be 3 stone lighter and gravity will have reversed itself :P

Saraxx

mnjodette
10-19-2008, 04:02 PM
Sara, I was in the hospital a lot the first year I got sick. I'm more like a 'deer in the headlights' in the hospital. Glassy-eyed, fuzzy headed, can't take it in, numb. Good thing my hubby was with me each time. I couldn't remember a thing otherwise.

I think you're right...your hospital personality (and SITC's) is an effort to be in control of something that's so much out of your control. And sometimes you've got to make a little noise just to let them know you're paying attention!

Jody

sits_inthe_corner
10-19-2008, 04:32 PM
I used to work as a geriatric nursing assistant. I had the greatest sympathy for the people I cared for.

Stuck someplace where they didn't want to be, with very little control over their day to day exestance.

I had a great nurse on one of my hospital stays, she made the world of difference to me.

I think my bigest fear is just being a lump of flesh that they have to do things to, so I makes sure the SEE me. Maybe that's not a good idea :lol:

sara akhtar
10-19-2008, 11:48 PM
I have the greatest sympathy for anyone having to nurse me - or having to control you SITC! :P

Have a great day everyone - I'm off to work.

Saraxx

Saysusie
10-21-2008, 10:17 PM
Hi Sara;
First, thank you for your kind sentiments. I agree, the people here are very responsive, truly concerned, and are always willing to help! Thank you for letting me know that we are providing information that you've found helpful. That is one of the primary goals of WeHaveLupus. :lol:
ALso, once you've joined our family, you become a part of our family. As such, you are ALWAYS welcome here...regardless of you diagnosis or lack thereof!
It is so funny to hear that you and SITC are bad tempered patients. I would disagree with that label and agree more with the fact that, in a hospital, you are no longer in control and you do not want to be seen as a piece of flesh. Both feelings and reactions are understandable.
Me, I am the best behaved patient! I do not let them ignore me or treat me like a lump of meat...I engage every single person who comes in contact with me. I make sure that they know me, that I know them, that we converse, and that they understand that I am a human being who hurts. I've found that for me, being this way, I get all kinds of special favors, extra attention, and a very quick response when I call for assistance! I've had nurses come into my room on their breaks to just sit and talk to me. Their family members come in and talk to me (not to mention, bring me special goodies that I like). I was once asked if I'd like to move to a private room so that I could get more rest, of course I said "yes". I was moved within an hour! This is what works for me!
We each have our own way of dealing with stressful situations. I try to make them as pleasant as possible for me, it is the only way that I can survive in a hospital.

Peace and Blessings
Saysusie

sara akhtar
10-23-2008, 11:21 AM
Saysusie

Your good nature reminds me of my mum. She just went into hospital for her 3rd bout of cancer - she's 83. She thanks evryone for every little thing they do for her and they all say she is a pleasure to treat. Before I went for my MRI scan yesterday she phoned me to tell me to grit my teeth and behave when they put me in the tube hahaha she knows me so well :oops:

Does anyone else ever wonder what's normal anymore? I have aches and pains all the time but when they are not too bad I begin to ask myself if perhaps at 45 this is normal and I'm really OK. There's no doubt that I feel much better than I did a month ago but then I'll have a bad night and I think I really must be sick. It's all very confusing because I'm definitely not as ill as most people on here but I still have a bit off a blistery rash on my hands, my thumb still hurts and something hurts when I breath in deeply. When I read about the severity of other people's symptoms and then I think maybe I'm OK because I'm still going to work every day. A month ago I stopped taking my anti inflams and codeine to see what happened but only lasted 24 hours before I chickened out because of the pain and I needed to be well enough to go to work. I'm tempted to try that experiment again - in some ways I'm worried that I'll never know how bad I am if I take codeine 4 times a day and my dicloflenic 3 times for ever. Do you think I should give it a try incase I'm actually better now? I don't want to just be ill because I've got it into my mind that I am. Does any of this make sense?

Sarax

sara akhtar
10-24-2008, 11:41 AM
Saysusie - you are a genius! It's just occurred to me that the reason the Rheumy said he might do an MRI scan of my spine to see if there is a trapped nerve is because of the thumb pain. And here was me thinking how stupid he was thinking I had a trapped nerve hahaha.You really know your stuff - thank goodness you are here for us.

Saraxx[/quote]

Saysusie
10-25-2008, 09:02 PM
Sara;
Thank You and I am glad that my information was helpful. I would not categorize myself as a genius (far from it!), but I am so flattered that you think so :lol:

Peace and Blessings
Saysusie