Horrible experience at G.P's.

Infections
1

I've just returned from the doctors surgery. I'm so upset.

I've had bouts of recurring symptoms and illness for many years now, including tenderness and pain down one side of my body (leg buttock and sometimes my face). Feelings of total exhaustion, weird sensations, depressive bouts, and sometimes but not always, small blisters.

During an attack a few months ago, I showed my partner the blisters I had at the base of my spine....almost as an after thought. He immediately said they looked like Shingles that he had had some years ago. ( Luckily for him it was a one off attack).

I had assumed the blisters I sometimes had when feeling ill, we're spots due to being constantly run down.

I then looked on line and indeed the images of blisters looked identical ... and I found this forum and it felt like all the pieces slotted together.

I finally thought I'd found out what this awful reacurring illness was, which gave me relief at finally knowing what it was... as I have been ill for so many years with the same recurring symptoms.

I made an appointment to see the first available doctor. It turned out to be a very young and inexperienced girl. She had no idea and had clearly never come across Shingles before. She had to go out the room and speak to another doctor, who was busy, so didn't come into the room to examine me.. She did no swab test on the blisters and did not confirm it was Shingles.

Instead the other doctor told her to make me an appointment to see a rheumatology specialist as I had presented with the same symptoms several times over the years (Some of those times I had some odd blisters which I didn't think to bring up, as I've previously mentioned as I thought I was constantly run down)

I've been wating for months and still have not received a letter of referal.

Since then, the episodes continue. I feel like my life has been hijacked.

It' feels like Ground Hog day over and over...

The only thing keeping me going is this forum...

Which brings me to today.

This attack is focused on the right side of my face and head. I've been feeling so depressed and incredibly exhausted. Really odd pain in my head which is causing me to not sleep. I've had tell tale tingling on the right side of my face and a few days ago, a blister (although very small) on the inside of my right eyelid.

I rang to see a doctor yesterday, to find out if I could take any medications to ease the symptoms.

However, they were all busy and I was promised a call back. No call came so I rang again today. Someone had made a mistake at not passing on the message to the doctor to call me.. I had no apology.

I don't drive (even if I could I'm feeling so ill I don't think I would have been capable of doing so anyway). I stupidly thought I could walk there; as it's usually about a 15 min walk ... Half an hour later I arrived.

I don't how how I didn't collapse. After a wait I was told I would be seeing a paramedic. Not a doctor. Something they have introduced recently at the doctors surgery.

I was not happy but went in anyway. He was surly to say the least. I burst into tears as I was feeling so ill. He said nothing...didn't even offer me a tissue. Just asked a few questions and I told him my symptoms ... he then said he would ask a doctor to come in. I had to ask to lie down as at that point I thought I might faint.

I had to wait with him in silence until the doctor came into the room.

I then had to go through telling the G.P my symptoms and previous experience with the young doctor. Again, blank look but this time he said it was not Shingles as I had no visible blisters on my face. I tried to explain everything I have read time and time again and on this forum ... that blisters are not always present and that I have had them in the past and had a small blister on my eyelid. He just looked at me as if I was an idiot. As did the paramedic

He then simply turned on his heel and left the room. No empathy... no explanation. .. nothing. I feel so frustrated and will NEVER return there again.

I am appalled at the lack of empathy, understanding and lack of knowledge that so called experts exhibit. I fully understand the workload of doctors but the arrogance and downright rudeness shown to me today is awful. I felt so humiliated on top of feeling so ill.

2

Hi 

so sorry you have had an awful time with your surgery . 

I had shingles in my eye , scalp & forehead . It all started 7 weeks ago . If you have it near your eye it's important to see an eye specialist . Have you thought about going to a&e ? It's a miserable illness . Have you pain in your eye ? 

Best wishes to you . 

3

Go to A and E or emergency/urgent care room when you have the rash or blisters. they won't diagnose shingles if they are not present at examination, (UK)! Can't speak for any other country. Rest is the best thing you can do with pain killers, ask the pharmacist if you can't see a doctor. Best wishes. Pollyanna UK

4

Hi Susan,

Thank you for your kind words.

It is comforting to share on here with people who understand and are there with support.

Sometimes a few kind words can make all the difference; especially when feeling so low.

I've had small blisters on my eyelid before during attacks. I've got a permanent scar from one under my eye.

No, I haven't thought of going to A&E as the 'new' blister is very small. It is more my head thats been painful and weird. It's not like a migraine type of pain, I can't really describe it.

I have to say that it's feeling marginally better today. It's the total overwhelming exhaustion and depression that are the most disturbing symptoms today. The frequency of attacks seem to be escalating as well.

I truly hope you are starting to feel better?

How is your eye now?

Kindest of regards

Ali

.

5

Hi 

the head pains are nasty and the extreme tiredness and low mood . I really hope you start to improve soon . The forums are great . People who understand this illness . 

My eye doesn't feel right yet . Maybe all the drops . 

Try to rest as much as you can . 

Sue 

6

alinight, sorry to hear your having so much trouble. I've had the post pain in my forhead and in my scalp for going on one year myself. I've been to just about evey kind of Doctor you can think of, but it seem like "it is what it is". For the last three weeks it seems like my GP has got the pain under control. At best there is very little pain, that never goes away, but when I wake up in the morning it's at it's worse which is still about a 5 or 6. That is way better then it was. When I first got the Shingles I thought I was having a Stroke in my head. It was the worse pain I ever experienced. For three month I was laid up on the sofa. One of the big issues was the depression. They tried gaving me antidepressants but they made me feal worse, so I stopped them. Hopefully you find a good doctor with compassion, and your partner really needs to step up for you. Shingles is no joke and you can't power through it, even if you thik your tough. The good news is it will get better, at least that's what they keep telling me. I know in my case I was at my wits end but slowly I started going out og the house and it got my mind off of it. Good Luck and try not to get depressed. Just remember it will get better. 

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susan, That's what I'm have trouble with right now. Both my Eyes bouther me. The best way to discribe it Is like I was swimming in a pool with my eyes open for a long time but I've been to the eye doctor four times and it's both eyes not just one. Every now and then I get a little dizzy, enough that I go lay down but that my be the Gabapentin, at least that's what I hope it is.

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I am so sorry to hear of your terrible experience and feel disgusted at the Dr's reaction, giving you no help at all etc!  I don't think this is uncommon either, I had shingles on my forehead, head and eye in March 2016 (still suffering every day with itching and sore eye from the PHN) I have noticed that drs seem to know hardly anything about shingles, as when I had symptoms and rang the Dr the night my eye started to feel and sore and itchy, eye was pink, forehead was itchy and stinging and red, she just said to use eye wash , can you believe it?!! I went to another Dr the following morning and was diagnosed with shingles and it affected my eye badly too!! Maybe if I had been seen sooner it would have prevented the awful complications that I still have!!  I do hope that you managed to see someone who showed more empathy towards you and that things were solved,  I have also found it comforting to hear other people's expreiences on this forum as it has made me feel that I am not alone!

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Hi Joseph,

Did you get shingles in your eye at all?  I feel as though it has never really gone as every day since March 2016 I have had a sore eye on and off every day, and have been told that this can last forever! I have a small scar on the cornea but have been told it is not in my line of vision thank goodness, as i was so worried about losing vision and still am if the complications continue!

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Hi Susan

I really hope your eye improves soon.

It's sometimes feels difficult to keep resting as I feel like I'm being lazy!

I keep getting repeated outbreaks and feel like I'm constantly ill. It also must be hard on those around me. People generally expect you to get better from an illness, and not keep getting ill a couple of weeks later again.

I really need to get to the bottom of why my immune system seems to be so poorly compromised.

Thanks again for replying to me.

All the best.

Ali xx

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Thank you Joseph

It's kind of you to reply.

It sounds like you've really been through it!

I think it's the frequency of attacks that is adding to my depression.

I start to feel a bit better and slowly regain my strength ... then I come down with another attack.

I need to find out why my immune system seems compromised.

Hoping you continue in your recovery every day. Keep strong.

Kind regards

Ali.

12

Hi Jane,

Thank you too for your kind words.

What would we do without this forum?

I have calmed down a little since yesterday, but still feel upset that I was treated so badly.

The doctor and paramedic, made me feel so utterly awful.

If I was feeling stronger I would actually make a formal complaint.

Your experience sounds awful too.

When anyone is in obvious pain and distress, being treated at best with apathy and at worse with downright ignorance and distain (in my case) is unforgiveable..

I really hope you continue to heal and get back to full health again as soon as possible.

With all the best of healing wishes,

Ali xx

13

Hi Ali, ,my first reply to you has gone to moderator for some reason. I think you should go to A&E next time your rash appears, asap! Some doctors will not diagnose shingles unless you have a rash. I had very little rash but lots of pain and still have PHN at times. I've never felt really well since I had it 2 years ago. If you really feel like you have a genuine complaint with your doctor or his surgery you can do it with PALS, look them up online at your local hospital website. I hope you get the help you need soon but consider using a different surgery in your area  if that's possible. Best wishes, Pollyanna UK. x   

14

Jane, no I never got it in my eye. I made it to the eye doctor in time. As a matter of fact I went to the eye doctor three times to make sure it didn't get in my eyes. Now it's a mater of putting up with the nerve pain and the Gabapentin seems to help, but my eyes are still not like they were before I got this crap. I also get a little light headed every now and then. Jane, Shingles is one of those things that none of the doctors really can only can make you comfortable while you have it. The only thing people that have Shingles can do is to have a doctor that is compassionate. Good lucky to everyone on here.

15

Hopefully it's just your age. I bought some B12 liquid and I started taking it every day with the Gabapentin. First time in about s6year that l felt like doing something and that is periodic.

16

Also I wanted to say that I went to a doctor for infectious diseases and he gave me the vaccine because I was over the Shingles at the time. So if you can get the shot as soon as you stop breaking out.

17

Hi and thank youl

I just wish there was more response from people who have had intense itching  around the eye after so long, as i have and what they have done to help stop it!! Maybe most people don't suffer after the first few weeks!! If the Dr had diagnosed me earlier ,  maybe I would not be in this position now!

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The vaccine is not free to people under the age of 70 in this country and is very expensive to get  done privately!

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By the way, when I saw my Dr the shingles was already in my eye, but I had the worst headache a week before, excruciating, at the back of my head one side, I kept going to out of hours Dr but was told it was possibly migraine, he couldn't have been more wrong!!The trouble is, when the rash appears it can be too late! I saw the eye dr very soon after diagnosis and had antivirals, but it was too late and the damage was already done, My eye has been sore all weekend and watering, stinging etc, I have just about had enough of it now!

20

Jane, my eye doctor told me I have dry eyes three times' but they water all the time. I think it's not getting lubricated in the back because when I start getting a head ache I flood my eye with drops and it seems to stop. I told my GP that I was starting to get head aches and she told me my left shouder was real tight and gave me some muscle relaters to see if it helped and I didn't have to take them long before they started working. My eye itches off and on and if it bothers me I have an eye cup and I fill it with eye drops. I also have a num eye brow and I use Diclofenac Sodium Topical Gel it's an generic brand. It helps me it might help you. I know I spent a lot of money tring to find something that would help.