[Mrs M]

Here I am again!

Just come home from another rheumy appointment and still no further forward.

I'm sure your all aware of my story but just need to let some steam off. After appointment with GP on Monday this week and he suggested my fingers were down to vasculitis and that they can't leave me much longer without treatment as my hands have been like this since Feb this year I've got no where today.

I had a stand in Rheumy as regular one was off on something urgent. She seemed thorough but I came away once again feeling low.
She said that my Fibromyalgia is really bad but there also seems other things are going on unrelated. I've heard this now for 8 months. I was under impression after speaking to GP that some meds would be given on this visit but no I just simply have to suffer it seems and at 29 it doesn't seem fair.

Stand in Rheumy ordered more blood tests

U/E
Liver
Random Glucose
CRP
RF
C (something) inhibitor - couldn't read Rheumy writing
Full blood count

Also when Nurse did my weight and blood pressure she said that BP was up slightly but that's probably due to the pain I'm in.
Anyway Rheumy said to stop taking Ami as it's not working and my shakey hand definitely could be a side effect. Although if the shaking doesn't stop it could be due to whatevers happening to me?
So I've now got nothing to treat the pain, Fibro or lesions on fingers.:hehe:

I can't take stronger pain killers than paracetomol due to sensitive tummy. Rheumy suggested that GP could refer me to a dermatologist but as for now she couldn't prescribe anything!

What a complete waste of an appointment. You wait weeks for them to come and then you feel much worse afterwards.

When I got home I phoned my GP who was great. He is now phoning the Rheumy Dept as stand in Rheumy doesn't seem familiar with my case. He said that we are all aware that something other than Fibro is happening and that they should be letting me know. Something interesting he said was that the Rheumy would tell him things different to what they tell me so obviously somethings going on. GP has prescribed Buprenorphine Transdermal patches for the pain but is worried of side effects of sickness. They usually give anti sickness tablets with it but I'm allergic to them. Gosh I feel so complicated.

Thankyou for letting me rant and wish I could be more positive. I hope that I'm not years down the line before diagnosis because things need to improve not only for me but family and work are suffering.

Love Mrs M x

 

[macfamily53]

Hi Mrs m

I am so sorry you are under so much stress right now and i can sure realte to how you are feeling,I am thinking maybe that the rhueme is possible waiting for the blood test before giving you anything for the pain and many other things.That has to very tough to deal with so many allergies with your tummy.I just wanted to let you know i am hoping things get taken care of and real soon((((((hugs)))))).

Tammy

 

[KarolH]

Mrs M.

Sorry your Rheumy appointment did not go well. It sounds to me like your GP is willing to treat your symptoms and your Rheumy is blowing you off.

Maybe you should find another Rheumy if this recent blood work comes back and still nothing is done.

It is frustrating and I am sorry your in Limbo Land.

I do hope you get some answers soon.

When are you having the blood work done and when is your follow up with the Rheumy doctor?

 

[Mrs M]

Hi Guys

thanks for your support. I'm back with Rheumy in 6 weeks as she said that because other things are going off I need to be closely monitored by them. Also I had the blood tests I mentioned yesterday straight after my appointment. The lady who took the blood was great as she got in first time which is unusal for me. They normally complain that my veins are too small, deep and wiggly:lol: Any how she might have got in first time but boy she's left me with a great big purple bruise and it's very swollen and lumpy. Oh my do I feel sorry for myself or what?:rotfl:

Have a great day everyone.
Mrs M x

 

[sjink]

Hi Mrs M

Sorry you are having such a hard time. I think it looks like the Rheumy has ordered more tests to be sure. It is good they are seeing you in 6 weeks. All that waiting is soooo difficult though and I do feel for you.

I think it is OK to feel sorry for yourself, especially as no-one seems ready to tell you everything that is going on, but I suspect they just want to be sure.

I hope the pain patches work for you, your GP seems really supportive.

It took me a while to adjust to the fact that sometimes they don't immediately prescribe meds to get things shifted. I think you will feel a lot better when the pain patches start helping and after your next appt. Maybe you should write down the three most important things you want to discuss with the rheumy next time and make sure he/she knows that. I find it easier to keep focused that way in what are nearly always quite stressful and frightening meetings.

:hug: :hug::hug:

Lots of hugs
Sara
x

 

[Mrs M]

Thankyou Sara

It's really kind of you to reply and offer support. Sometimes although family are great they don't fully understand so to come on here and have support and advice from people such as yourself is wonderful to say the least.

My GP is absolutely wonderful and if only he was my Rheumy I'm sure I'd have had answers by now:lol:

About the patches I'm really not sure:worried: After so many side effects to meds I decided to check on internet about them and the side effects seem just awful. I know I shouldn't just dismiss as GP is really trying but my previous history with meds and side effects is a nightmare.

Hope you are well Sara.
Mrs M x

 

[sjink]

Hi again Mrs M

I get terrible drug (and other) allergies too, so GP won't risk prescribing something new. I am waiting to see a psychiatric specialist just to get an anti-depressant, very frustrating but necessary.

I think the idea behind patches is to bypass the stomach.

All drugs seem to list dozens of possible side effects, but most of them are not likely to happen in most people. I was frightened to take my latest NSAID because of the fear of outbreaks of rashes, or other symptoms. Then summoned up the courage and no real side effects and not much improvement either of symptoms!

I have come here for support and friendship too, it takes the strain off my partner (who does understand better than most) and helps me vent my low feelings and uncertainty. If you put together the combined knowledge of everyone (especially the moderators who seem to know soooo much) you can get the info that medics don't have the time to pass on.

I hope you are having a better day today. We have to go out to a birthday celebration, I would rather hide at home but am going to make myself go for an hour. It will no doubt be fine when I get there.

Lots of love
Sara

 

[Katharine]

Hi there,

I don't have much to add really to what the others have said. I'm sorry you were so disappointed by the appointment and really hope that things are different in 6 weeks.

It sounds like you have a really fabulous GP and good job you do!!!

sending lots of hugs and best wishes,
:hug:

Katharine

 

[Nutty]

I feel really bad for you Mrs. M. That really sucks, if you don't mind me saying so. There is nothing like living in pain every day. I'm going through that myself now, but I have an excellend Rheumy and GP. Hopefully, your regular Rheumy will be better. Maybe because this Rheumy was a fill-in, he/she was hesitant to do anything? If that's the case you wonder why they fill in? Maybe it's a case of "territory". I know my Rheumy won't prescribe any medication that is not related to Lupus, for example pain or sleeping pills. Then my GP is not allowed to perscribe certain medication such as Methotrexate that I have to take. So, it is very frustrating as we are sent all over the place to get the meds we need.

Anyway, I hope you get some relief with the meds your GP provided withouth getting sick. I'll keep you in my thoughts and prayers. Good luck with your next appointment as well.

Nutty

 

[LolaLola]

Dear Mrs. M,
I really feel for you. I had a local Rheumy and Pain Consultant who were both a total waste of breath. They were quite happy to fill me up with steroids with no diagnosis and no tests. People on the Internet encouraged me to go and see Dr. D'Cruz in London. It was the biggest favour they could have done me. I was helped straightaway even though at that time my boods were still negative.
I know London is a long way from you and can be expensive, but it is good to remember that it is there and you would definitely be helped.
When you have built yourself up for an appointment it is always dreadful when you end up waiting again for definite news.
For what its worth you have my sympathy, come here as often as you like, we will all support you.
x Lola

 

[Mrs M]

Thankyou Thankyou Thankyou

You people are just so supportive and give such sound advice.
As you say Lola maybe because she was a stand in she didn't want to do much! Hopefully I will get to see my regular rheumy in 6 weeks and hopefully be another step forward in feeling better.

thanks Nutty and you're spot on it sucks:rotfl:

Thanks Katherine for your support and much needed hugs.

Hi Sara hope the birthday celebration went well.

Mrs M x

 

[halfpintfl]

Mrs M. Hi there, first of all let me tell you that today is one of my day's
where I have left mymind &memory somewhere else and I can't find them. So at this time, I don't know how long you have had your Rheumy.
But, there is one thing I wanted to say. You keep talking about blood tests, they are only a guideline to tell the dr. in which way to go to begin.
There is no blood test that can say "yes" you do have Lupus , or "no" you
don't have Lupus. Other things are important, like your list of your past personal health, your health now, all your symptoms,has it changed how you go through a day? Also, it is how he observes you while in the office, how you look, your nails, skin, and much more. So if you have not made
one of these lists, it would probably help. If you did, and now I know that I have to go back and look for my mind----soooooory (honest):wink2:

 

[Mrs M]

Hi Halfpint

Hope todays a good memory day cos it ain't for me :rotfl:

You've mentioned about the blood tests and I just wonder how long they will actually let this all carry on for before treatment. I'm sick of them saying that things are going on and not doing anything about it. For this appointment I felt really well prepared from everyones advice and experiences I've read here I'd gone with photographs of my fingers, list of symptoms, questions I wanted to ask etc... but yet nothing

As I've mentioned my GP said only a week ago they have left me long enough without treatment so I guess he thought this appointment was going to be different too.

Bloods may not be conclusive but I can't make up the rashes on my fingers and the lesions along with swollen bottom lip and ulcers, swollen face because of my stupid sinus problems along with how weak I feel and look!!!!! I truly feel and look terrible. Also it was Rheumy that noticed nail fold changes along with marked livedo in my legs which I never knew about. I never questioned them as I didn't know????

Also Rheumy concerned about family history of diabetes, thyroid problems, heart problems and raynauds but to name a few.

So sorry I've gone off on one.

Mrs M xx

Forgot to say but thanks for your reply Halfpint.