Pain Pain Pain : It seems that's all I ever feel... - LUPUS UK

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Pain Pain Pain

goodwitch011070 profile image
6 Replies

It seems that's all I ever feel. Sometimes I feel so exhausted for no apparent reason and I don't feel like doing anything but I know that's not a choice I have because I have my grandchildren to take care of.

I recently move to live close by my children although moving here wasn't a plan. I haven't seen my Dr in over a year and now I'm moving once again so seeing a Dr yet again isn't a choice I have at this point.

I've been self medicating by drinking which is new to me because I haven't drank before that much but now I'm drinking a few drinks before I go to bed.

I'm not sleeping well and abput a month ago I hurt my back, went to ER and they told me I have onset arthritis in my back. I'm not sure what that really means but I'm at the point where the pain that I feel is driving me crazy. I feel as if whenever I talk with friends or family about my pain and the severity, I feel as if they think I'm lying but how bad it is because I still do things arnd the house, cooking, cleaning and taking care of my grandkids. Sometimes though I get pain in my knees from going up and down stairs all day.

There are days where I feel so so tired, in so much pain in my legs but it feel as if I have bruises or a Charley horse and I can't stand the pain but I've been living with it for so long I really don't know what to do about it. Sometimes I'm depressed because I feel the pain will never stop. I'm tired of it.

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goodwitch011070 profile image
goodwitch011070
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6 Replies
PMRpro profile image
PMRpro

Do you have a diagnosis of any sort already? I'm assuming you are in the US?

You are obviously clinically depressed - and alcohol will make that worse not better. I think you know that really don't you? Drinking will make your sleep pattern bad too so dealing with that may help sort out both things.

What the ER told you was probably you have osteoarthritis in your spine. Google it to find out more.

But really, although people on this forum can listen and sympathise with you - and they all have plenty of experience of pain - only you can take that first step to get yourself out of this hole.

Charliebear68 profile image
Charliebear68

Hi and welcome,

You really need to see a doctor. Self medicating with alcohol is a very slippery slope. I understand that the pain can physically and mentally draining but you need help. Are you taking any over the counter pain relief medication? I know that aren't as powerful as prescribed medication but the thing may help. I really think you should see a doctor as PMRpro said - although people on this forum can listen and sympathise with you - and they all have plenty of experience of pain - only you can take that first step.

Sending you massive hugs🌷

Charlie xx

ukgospeldiva profile image
ukgospeldiva

Oh lovey, alcohol is a stimulant because of the sugar? The others are right, to self medicate with alcohol will not only put on weight, raise the risk of diabetes ,liver damage and leach the body of nutrients but, the same issues​ and problems you have are still there the next day? And the days​ after,?

Please find the time and reconsider going to a GP to get the correct treatment. I'm concerned that you have pain in your legs from the spinal injury. This could be more significant than the initial diagnosis a year ago of 'arthritis' and the pain that has led you to self medicate with alcohol tells me it's serious.

patientpat profile image
patientpat

Hello Goodwitch,

Your story really touched me today.

Suffering from acute on chronic pain can be a debilitating, lonely and depressing experience, especially when you have to take care of others and their needs take priority. I can relate to this completely especially with having to carry out domestic physical and practical tasks.

That being said you always have a choice. Every decision has consequences. If you do nothing and continue drinking,you are more than likely to get worse symptoms over time, which feed into that 'vicious cycle' and stop you from doing the things you want and need to do.

I would suggest that you get to see an understanding and specialist doctor asap and pain consultant. pain is known to become worse with Depression and overdoing things. Learning more positive methods of controlling pain is the key I think. That may include appropriate medication.

Getting others to understand what is happening has been a hard one for me.Many reasons why we become 'invisible' when we have multiple symptoms. I have found it extremely difficult to say no to those around me as it has implications for their well being and lives. My daughter has three children and she is very unwell.There is no one else but my husband.As a Mother I feel her pain and a deep sense of responsibility for their welfare. Having said that I do have to say no sometimes and pace myself. I know if I don't do that I will not be able to continue.

Pyschologically, I have no intention either of letting these conditions and the pain they cause me daily of robbing me of my life and family.! It has made me a much stronger person in many ways although I would rather not of had it at all. there it is goodwitch.I wish you well.

Silvergilt profile image
Silvergilt

As someone who used to live in the US, I know the advice you have received is all very well, but the medical system there is very different from elsewhere, and if you don't have money to see anyone for treatment...well...this happens a lot. It happens a lot in the UK as well; untreated pain means people find ways to self-medicate. It's not uncommon, and it's not pretty. It's easy to say 'you have a choice' but when the choice is get treatment and be in debt or...not...then many people choose the latter.

Doing things even if in pain because you feel you have to? Yep, been there, done that; I was carer to my autistic son and there was more than a few times I made his breakfast while crawling.

So I empathise, I do. I have no advice for you. I can only say I hear you, and I witness.

I wish you strength, and I hope you explore some options and solutions, such as they are. I hope the Powers that Be clear the way for you so you can figure out what you might be able to do to get out of the rut you are in.

Chanpreet_Walia profile image
Chanpreet_WaliaLUPUS UK

Hi goodwitch011070,

I am sorry to hear you have been feeling poorly, muscle and joints aches/pains as well as extreme fatigue are both common symptoms associated with lupus. To read more about the symptoms of lupus click here: lupusuk.org.uk/wp-content/u....

Pain can be difficult to deal with which is why we published a factsheet containing services and support helplines which may be of interest to you: lupusuk.org.uk/wp-content/u.... Last month we published a blog article on ‘pain management’ which you can read here: lupusuk.org.uk/pain-managem....

We also have an article about managing fatigue at lupusuk.org.uk/managing-fat.... I’d like to draw your attention especially towards the section about sleep hygiene. Alcohol can interfere with healthy sleep patterns, which in turn can affect your energy and pain levels.

Alcohol can be consumed by people with lupus however; patients must always consult their doctors before doing so as certain drugs can have adverse effects if mixed with alcohol. Excessive alcohol consumption can be detrimental to your health, to find out more please check out: units.nhs.uk; need2know.co.uk; talktofrank.co.uk

Self-medicating can be dangerous and could possibly put your life at risk, it is advised that you try your at most hardest to get an appointment with a doctor as soon as possible (even if your are moving away from the area).

Please keep us updated, wishing you all the best.

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