What is wrong with me? Is it PMR?

[Feelfreetorattle]

Hi everyone. I am still at the diagnosis stage, waiting for a specialist to see me to get an official diagnosis. I might not have this but may have something else basically.

For the last 4 years, since having a severe reaction to strong penicillin based antibiotics (given for an ear infection - that caused hives, swollen hands and feet, blood vessels that look more pronounced and strange, pain in the left side of my head, migraines and blurred vision), I have found that it is getting harder to give blood samples. The last attempt failed completely last November, as I nearly passed out with the pain. I never had a problem before this hives attack and the problem has gradually got worse and worse. I dread having to give blood samples now and even question whether it is possible or not anymore, but I suspect that I will be told I must have blood samples taken. I still have some residual symptoms from that attack 4 years ago - swollen hands and feet, occasional pain in the left side of my head etc, and my GP isn't interested. I have been bringing this situation up over and over again, and am getting little help. A referral to a hematologist brought no help either.

Then, in August, I went to bed one night feeling OK, and the next morning, I could barely move my arms. My muscles were stiff, they ached and felt weak etc, and I could not think of an injury. Nothing seems to help. I am totally exhausted now. But seeing as I don't know what's wrong with me, I could be trying the wrong things, or not giving things enough time to work. I am possibly trying things that help but then I'm cancelling out all the good work done by doing things that don't.

The two events may be unrelated, but I don't think they are. My veins had looked better and now look worse again. They look very pronounced and odd to me.

I have spoken to my GP and I have been referred to a rheumatologist, but I will probably have to wait until the end of the year or next year even, before I see someone. The pain is getting worse in my left arm, in which I have very restricted movement now too... and I don't believe in just sitting here, letting things get worse, whilst waiting for help that won't come for months. So I just wondered - has anyone else here had a similar thing happen to them? Has anyone else had an antibiotic trigger? Has anyone else had trouble with painful veins, making it hard to take blood samples etc? Has a problem like this led to PMR or GCA for anyone? If I could find more evidence that this is what I probably have, I could maybe find ways to push my GP more, as she does not seem to be taking the situation seriously and is not offering any kind of treatment until I have seen a specialist, and maybe I could help myself more too, perhaps by trying particular stretches or exercises?

Any help, advice or shared experiences etc would be most welcome. Thanks for your help and everything!

[123-go]

Hello, Feelfreetorattle. You certainly need all this sorted out as soon as possible. I know very little about allergic reaction to penicillin/antibiotics but the symptoms of waking with stiff, aching muscles can be indicative of PMR and headaches with blurred vision and swollen blood vessels of GCA. The problem with painful blood tests is something I haven't come across. All I can do here in response is to say how I would go forward.

Having a GP who is so dismissive must be awful and it's clear that you need investigations sooner than possibly next year. Changing your GP is called for and I would start this process soon. Anyone reading your post will see that you are extremely stressed and your mental health is very important. I would be very tempted to ring 111 (with a pre-prepared list of symptoms) who would most likely advise you to go to A and E or simply take yourself there. I know this doesn't sound very appealing but you would be seen in the relevant departments and you would be given a diagnosis/ information on the same day. This would involve blood tests as you will know but even when you do eventually get to see a rheumatologist through your GP referral this would be necessary.

I don't feel qualified to recommend exercises you could do before you have a diagnosis. Perhaps for now you could look up mindfulness/meditation techniques to help you relax a little, even if it's just for a few minutes at a time.

I wish you all the best. Please let us know of any developments.

[SnazzyD]

Infections, especially those that have a systemic affect can trigger autoimmune reactions such as PMR and it is often referred to by others. Have you tried another another or another practice? Why can’t they try a couple of weeks of Pred?i do get angry when docs think their job is over when a referral is made even when they know a person is suffering and going to be for months or a year. I bet they wouldn’t like it or stand for it. I do think that when some struggle to diagnose, rather than feel they need to learn, their ego protects them by finding fault in the patient. Yes, in an ideal world you wait a few weeks maximum but these are not ideal times, especially now, so they need to step out of their comfort zone and act in the interests of preventing human suffering. They took an oath after all.

Bloods- when I had to take blood from delicate people I always lay them down for a few minutes and used a small butterfly cannula. It rarely failed, though at times I had to go for other veins than the usual arm ones. You need to go in very well hydrated and warm. Did they do that for you?

If you are feeling vulnerable, do you have an advocate? I think it is time to start questioning the lack of care. Start with someone else ASAP. Go in with a clear history written down too, this helps it to not come out either as a desperate but garbled monologue or a tongue tied, content light cloud of frustration. A short course of Pred is not an unreasonable request.

[PMRpro Ambassador]

It really is very difficult to make diagnoses of many things without taking blood samples but there are ways of making it better as Snazzy has said. You need to be well hydrated and warm - and it needs to be an experienced and sensitive phlebotomist. My husband had similar problems to you after chemotherapy but the phlebotomists here have never failed - in the UK it was dire! If it is difficult to find a vein they can use ultasound to identfy the vein - and in a final approach someone experienced in paediatric work should be asked.

[piglette]

I am impossible to get blood out of. They have tried every bit of my arms and hands. I have phlebotomists who refuse to even attempt taking blood from me. Apparently some people are like that. In hospital recently I had terrible trouble with cannulas too.

If you have to wait so long yo see a rheumatologist, would your GP give you steroids fir a week or so to see if they help. If they don’t you have lost nothing and if they do it is good news.

[Feelfreetorattle]

Thanks for the replies. I have tried making sure I'm hydrated, warm and comfortable etc. I've tried the Emla cream too. I insist on butterflies too. The pain I get is like an electric shock. It stretches up and down my arm, into my hands and shoulders - both arms. The first time it happened I was told that a nerve had probably been caught, but they have tried so many times since, in different places, with no luck. It doesn't help that my blood hides too. I dread having to have blood tests now and can't sleep the night before. I get so stressed. My GP is not terribly sympathetic about anything with me - I have Hashi's too and genetic complications with my thyroid. I feel like the original Hives incident went away but left damage, and I am susceptible to recurrences now and consequential problems. This arm pain is completely new but I suspect it is a long-term advancement to what happened before. I don't think I will ever get answers now. I have no option to change GP as there are no other local ones. If I could find evidence that suggests I am right, in my symptoms and/or responses to treatment attempts etc, I might manage to persuade my GP to try me on steroids. That is what I really need.

Thanks again for your help.