Help! Long list of problems :(
Options
MooNoo
Member Posts: 5
Hi everyone, I'm new here and hoping for some advice.
I first saw my consultant in 1999. At first I saw him every 6 months but for the last 7ish years it's been annual although that's been pushed to 14 months in the last couple.
I have had x-rays taken at the start and once since I think that was about 6 years ago.
I have had blood taken more often (every 2ish years) but not for the last 3 years (for him that is).
The diagnosis I was given aged 21 was arthritis. A few years ago I was copied in on a letter from him to my GP stating it was sero negative arthritis.
I am due an appointment but it keeps being cancelled. This time it is with a specialist nurse and will be the first time I've seen anyone else.
It started as wrist pain but now it's also hand, finger & thumb. Constant aching with odd sharp stab pains. They are weak and useless most of the time.
I have had major problems with my grip especially in my dominant hand for 3 years but he just says it will come back. It hasn't.
I struggle to write at all but can manage my name and a Happy Birthday most of the time. I struggle to use cutlery a lot of the time and have to have my food cut up all of the time. Obviously there are other issues too.
I can type and use the touch pad on and off most days as long as I take the cues to stop. It's enough to use the internet but I can't use apps that need to drag & drop, click and hold etc.
I can't make a strong fist I can slowly get them in that sort of shape. I can't make my hands flat (unless I use a table), it's like they're too weak to stretch the fingers. It doesn't hurt to try and do that! My hands seem to want to be in a claw kind of shape now.
I have had an itchy red rash on my hands & fingers for at least 3 years which I assumed was to do with the arthritis as it mirrored the pain locations. My consultant has been aware of it but last year admitted he had no idea what it was and wrote a letter to get me referred to a dermatologist.
I have been seeing the dermatologist for a year. Originally he thought it was Lupus or less likely Granuloma Annulare but seems to have dismissed them since the tests. I have had blood tests and a biopsy. The biopsy showed a psoriasiform rash. I have tried Elocon & Dovobet, they haven't cleared it although it is less rough. The dermatologist doesn't think it's psoriasis.
The rash on my fingers is in stripes above and below the knuckle but not on the knuckle. It isn't on my left ring finger or right little finger and never has been.
It was on the backs of my hands but that cleared by itself without treatment around the time of referral. I have a tiny patch (which used to be larger) on my left thigh.
A while (can't remember how long) before this rash I had an episode where all the skin kept peeling off of my fingers and my palm was red.
Again before this I had a bullseye rash after being on the common (where there are deer) I'd seen Lyme disease online and was concerned but the GP wasn't and just gave me a cream I think. I mention these as background as I did to the dermatologist.
I also have started to get a rash on my chest if I'm exposed to the sun. The dermatologist doesn't seem worried, he says to wear suncream which I do. I never sunbathe. I first got it last year on a overcast rainy day in April. I didn't have cream on and was outside for less than an hour in the morning. Since then if I go outside for 10 mins and the sun is out it starts. I try not to go out at all. I was in the car for a few hours 2 months ago and it happened again, the windows weren't open at all so it also happens through glass. I think it's also on my cheeks but it's less visible.
I also have a grey/brown bruise like round mark on the left side of my stomach. I've had that several years. It's the size of a cup rim. The dermatologist said it's a haematoma under the skin and the skin is fine. It has never gone or faded since it appeared, if anything it's getting bigger. He doesn't seem to believe me that I've had it that long and it hasn't faded.
Recently (last 6 months) I have been having bowel and gynae problems too and am waiting for a pelvic ultrasound. The GP said to speak to dermatology about the mark on my tummy I mentioned above but as he says it's not skin I'm wondering if it could be related to this issue. The GP is more concerned about the gynae issues than the bowel, she has hinted at ibs.
I have had an episode of a really dry cheek in the last month which sipping water couldn't help. I had to wedge a slice of lemon between my teeth and cheek to give me some relief. It carried on for about 3 days. I have also had odd tastes (metalic and non metalic) in my mouth and the feeling like there's a coating over the inside at different times over the same period.
I have a good brain, it's the best bit of me but in the last few weeks I have been struggling. I can't remember dates or times and am struggling to do more than one thing at a time like using the computer and listening to my partner. I keep having to get him to repeat things because I'm not paying enough attention. I also can't seem to get the right word. Sometimes I think I know what I'm going to say but then forget before I get to the end or other times just a single word is missing. I might have the start of the word for example "con" and then go through "conversation", "consolidation" before either my partner works it out or I can work out I'm trying to say "condensation". This has never happened to me before and it's both annoying and worrying.
Also in the last few weeks I've been getting a bit of pain between my shoulder blades and on my left elbow. It's more annoying than painful but I thought I'd mention it.
Last weekend I couldn't get comfortable in bed so got up and came downstairs. I felt sick but before long I was in so much pain, it was all over, between my neck and pelvis. I can't pin point whether it was bowel or chest or what. My partner had to rub my back for 3 hours until the pain went as it helped distract me. The pain was constant but kept getting worse before easing a bit. I felt like I couldn't breathe at times but I think I was panicking a bit by that point. I was very close to going to hospital. I took some painkillers and had a peppermint tea. The pain eased and I was able to go to bed. It was more severe than the bowel pains I've been having and over a greater area. I had had a Thai takeaway but we've eaten from there before and I didn't have diarrhoea and I wasn't sick in the end either.
History:
I have anxiety and depression and have done for years.
I have had trouble sleeping since I was a teenager.
I'm overweight and have been since I was at primary school.
I am fatigued all of the time but have episodes where it is much worse. I have seen the doctor twice in the past about it but it's not taken seriously because I'm overweight.
My achilles tendons are painful and I can't wear shoes that touch there, that has been the case for a number of years.
In 1998, a year before arthritis diagnosis, I had a problem with my neck which I thought was work related and I was prescribed physio.
About 3 years ago my right leg swelled seemingly for no reason. I could only walk by using that foot on tiptoe or wearing a shoe on that foot but not the other. That carried on for a few weeks. The knee sounded like it was clicking in and out of joint.
Sorry for going on so long and thank you for reading it all!
I don't have my test results but I believe they just show general inflammation.
I am not on any medication although I might be getting a new ointment from the dermatologist.
I have never been prescribed anything for my arthritis. I take over the counter painkillers.
Please can you tell me if the rheumatology consultant experience is typical because it seems to me that everyone is on meds except me.
I've never seen my GP about my arthritis except when I got referred at the start and that was a different GP. I was under the impression that as I was seeing the consultant I should speak to him about everything. I'm not so sure now. In the past he's asked me what medication I'm on and I've told him just ibuprofen. Should I be seeing my GP about other meds, does he think I see my GP about it? Apart from recently going about my bowel/gynae issue and last year getting the referral to the dermatologist I haven't been to my GP for years.
I have a feeling many of my symptoms are connected so has anyone got any ideas or experience? Thanks again for your time.
I first saw my consultant in 1999. At first I saw him every 6 months but for the last 7ish years it's been annual although that's been pushed to 14 months in the last couple.
I have had x-rays taken at the start and once since I think that was about 6 years ago.
I have had blood taken more often (every 2ish years) but not for the last 3 years (for him that is).
The diagnosis I was given aged 21 was arthritis. A few years ago I was copied in on a letter from him to my GP stating it was sero negative arthritis.
I am due an appointment but it keeps being cancelled. This time it is with a specialist nurse and will be the first time I've seen anyone else.
It started as wrist pain but now it's also hand, finger & thumb. Constant aching with odd sharp stab pains. They are weak and useless most of the time.
I have had major problems with my grip especially in my dominant hand for 3 years but he just says it will come back. It hasn't.
I struggle to write at all but can manage my name and a Happy Birthday most of the time. I struggle to use cutlery a lot of the time and have to have my food cut up all of the time. Obviously there are other issues too.
I can type and use the touch pad on and off most days as long as I take the cues to stop. It's enough to use the internet but I can't use apps that need to drag & drop, click and hold etc.
I can't make a strong fist I can slowly get them in that sort of shape. I can't make my hands flat (unless I use a table), it's like they're too weak to stretch the fingers. It doesn't hurt to try and do that! My hands seem to want to be in a claw kind of shape now.
I have had an itchy red rash on my hands & fingers for at least 3 years which I assumed was to do with the arthritis as it mirrored the pain locations. My consultant has been aware of it but last year admitted he had no idea what it was and wrote a letter to get me referred to a dermatologist.
I have been seeing the dermatologist for a year. Originally he thought it was Lupus or less likely Granuloma Annulare but seems to have dismissed them since the tests. I have had blood tests and a biopsy. The biopsy showed a psoriasiform rash. I have tried Elocon & Dovobet, they haven't cleared it although it is less rough. The dermatologist doesn't think it's psoriasis.
The rash on my fingers is in stripes above and below the knuckle but not on the knuckle. It isn't on my left ring finger or right little finger and never has been.
It was on the backs of my hands but that cleared by itself without treatment around the time of referral. I have a tiny patch (which used to be larger) on my left thigh.
A while (can't remember how long) before this rash I had an episode where all the skin kept peeling off of my fingers and my palm was red.
Again before this I had a bullseye rash after being on the common (where there are deer) I'd seen Lyme disease online and was concerned but the GP wasn't and just gave me a cream I think. I mention these as background as I did to the dermatologist.
I also have started to get a rash on my chest if I'm exposed to the sun. The dermatologist doesn't seem worried, he says to wear suncream which I do. I never sunbathe. I first got it last year on a overcast rainy day in April. I didn't have cream on and was outside for less than an hour in the morning. Since then if I go outside for 10 mins and the sun is out it starts. I try not to go out at all. I was in the car for a few hours 2 months ago and it happened again, the windows weren't open at all so it also happens through glass. I think it's also on my cheeks but it's less visible.
I also have a grey/brown bruise like round mark on the left side of my stomach. I've had that several years. It's the size of a cup rim. The dermatologist said it's a haematoma under the skin and the skin is fine. It has never gone or faded since it appeared, if anything it's getting bigger. He doesn't seem to believe me that I've had it that long and it hasn't faded.
Recently (last 6 months) I have been having bowel and gynae problems too and am waiting for a pelvic ultrasound. The GP said to speak to dermatology about the mark on my tummy I mentioned above but as he says it's not skin I'm wondering if it could be related to this issue. The GP is more concerned about the gynae issues than the bowel, she has hinted at ibs.
I have had an episode of a really dry cheek in the last month which sipping water couldn't help. I had to wedge a slice of lemon between my teeth and cheek to give me some relief. It carried on for about 3 days. I have also had odd tastes (metalic and non metalic) in my mouth and the feeling like there's a coating over the inside at different times over the same period.
I have a good brain, it's the best bit of me but in the last few weeks I have been struggling. I can't remember dates or times and am struggling to do more than one thing at a time like using the computer and listening to my partner. I keep having to get him to repeat things because I'm not paying enough attention. I also can't seem to get the right word. Sometimes I think I know what I'm going to say but then forget before I get to the end or other times just a single word is missing. I might have the start of the word for example "con" and then go through "conversation", "consolidation" before either my partner works it out or I can work out I'm trying to say "condensation". This has never happened to me before and it's both annoying and worrying.
Also in the last few weeks I've been getting a bit of pain between my shoulder blades and on my left elbow. It's more annoying than painful but I thought I'd mention it.
Last weekend I couldn't get comfortable in bed so got up and came downstairs. I felt sick but before long I was in so much pain, it was all over, between my neck and pelvis. I can't pin point whether it was bowel or chest or what. My partner had to rub my back for 3 hours until the pain went as it helped distract me. The pain was constant but kept getting worse before easing a bit. I felt like I couldn't breathe at times but I think I was panicking a bit by that point. I was very close to going to hospital. I took some painkillers and had a peppermint tea. The pain eased and I was able to go to bed. It was more severe than the bowel pains I've been having and over a greater area. I had had a Thai takeaway but we've eaten from there before and I didn't have diarrhoea and I wasn't sick in the end either.
History:
I have anxiety and depression and have done for years.
I have had trouble sleeping since I was a teenager.
I'm overweight and have been since I was at primary school.
I am fatigued all of the time but have episodes where it is much worse. I have seen the doctor twice in the past about it but it's not taken seriously because I'm overweight.
My achilles tendons are painful and I can't wear shoes that touch there, that has been the case for a number of years.
In 1998, a year before arthritis diagnosis, I had a problem with my neck which I thought was work related and I was prescribed physio.
About 3 years ago my right leg swelled seemingly for no reason. I could only walk by using that foot on tiptoe or wearing a shoe on that foot but not the other. That carried on for a few weeks. The knee sounded like it was clicking in and out of joint.
Sorry for going on so long and thank you for reading it all!
I don't have my test results but I believe they just show general inflammation.
I am not on any medication although I might be getting a new ointment from the dermatologist.
I have never been prescribed anything for my arthritis. I take over the counter painkillers.
Please can you tell me if the rheumatology consultant experience is typical because it seems to me that everyone is on meds except me.
I've never seen my GP about my arthritis except when I got referred at the start and that was a different GP. I was under the impression that as I was seeing the consultant I should speak to him about everything. I'm not so sure now. In the past he's asked me what medication I'm on and I've told him just ibuprofen. Should I be seeing my GP about other meds, does he think I see my GP about it? Apart from recently going about my bowel/gynae issue and last year getting the referral to the dermatologist I haven't been to my GP for years.
I have a feeling many of my symptoms are connected so has anyone got any ideas or experience? Thanks again for your time.
0
Comments
-
Hello moonoo and welcome to the forum. We're good at giving support on here but we're not medics and can't do diagnoses. Having said that, you do have a diagnosis of sero-negative arthritis, don't you? It can be difficult to pinpoint which variety of ser-neg someone has but the treatment is more or less the same.
What I find puzzling is that, with that diagnosis, you've not been offered medication. Has your rheumatologist never suggested methotrexate or sulphasalazine or hydroxychloroquine?If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
Hi stickywicket,
Thanks for the reply. No medications have ever been suggested or discussed with me. At either the first or second meeting the consultant said they didn't want to start me on any medication yet as that would mean I wouldn't have it available to use later. I assume they stop working after a while. That was 13 years ago though.
The arthritis is much worse than back then. I was able to work, drive, write, cut my food, look after myself etc then.
I have explained I'm having problems doing everyday things but it's glossed over.
I don't know what to say to be taken seriously. I'm only ever in there a few minutes, he makes me lift my arms and bends my wrists, asks me what medication I'm taking and that's it. See you in 12 months.
I'm at my wits end.0 -
If it's that bad maybe a change of consultant would help. You are perfectly entitled to ask.If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
Yeah I'm wondering that myself. I can't even get to see the one I've got though so there's probably not much chance of seeing a different one. I'll see the nurse and see what she says.
I don't know how bad it is as I haven't got anyone to compare it with.
I often try to convince myself that it isn't that bad or I would have a treatment plan and there are many more people worse off than I am. I hate causing fuss which is probably why I've ended up in this situation. Other times I think it's ridiculous that I'm having to put up with this and there must be something they can do help.
I hope I'm feeling strong the day of my next appointment!
Thanks.0 -
Hi Moonoo
I am sorry to read your story. I am surprised you have not been to see your gp as he is the one who could prescribe meds for you. Your consultant sounds like a waste of space, sorry. I would have got a second opinion a long time ago. It is not right that we have to fight to be taken seriously if we feel we are being ignored but unfortunately we do sometimes. This is made more difficult when one feels unwell and generally down about things.
You are the one that knows your body best and if you feel you are not being listened to and looked after it is definitely time for a change. I would suggest a visit to your gp to discuss your concerns.
I hope things begin to become easier for you soon with the help of your gp. Do keep us posted.
Elna xThe happiest people don't have the best of everything. They just make the best of everything.
If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.0 -
MooNoo wrote:I often try to convince myself that it isn't that bad or I would have a treatment plan and there are many more people worse off than I am. I hate causing fuss which is probably why I've ended up in this situation. I hope I'm feeling strong the day of my next appointment!
Thanks.
Hi again Moonoo
There will always be people worse off than you. You are you and you know that you are in pain and deteriorating and slipping through the net. The majority of patients are treated well. You are a special person to many and you do have to cause a fuss sometimes, even if it is not in your nature. Nowadays it seems it is the only way.
I too hope that you are feeling strong the day of the appointment.
Elna xThe happiest people don't have the best of everything. They just make the best of everything.
If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.0 -
Hello MooNoo, it's lovely to meet you and I hope that we can help with information and support. I have read your first post twice but, due to struggling myself, I have not properly absorbed all the detail it contained. I apologise, I will re-read tomorrow and I hope to be able to answer then. DDHave you got the despatches? No, I always walk like this. Eddie Braben0
-
Thanks for your replies elnafinn. I didn't see my GP because I thought they would just say I needed to speak to the consultant. I'll have to see them in a few weeks about the results of the pelvic scan so I'll speak to them then. I imagine it will be before I see the rheumy nurse so they might help with what to say to them. I'm seeing a different GP than my normal one at the moment so I think that's in my favour too.
Should I ask for certain medication or just tell them what's going on and hope they suggest something?! I will have to read up on it all.
Hi dreamdaisy thanks for reading my post twice, maybe three times now, that's more than anyone needs! I rambled on a bit, sorry about that. I hope you're having a better day today and if not please don't bother with me.
Thanks guys.0 -
Hi Moonoo
It is sometimes good to see another GP as they can have different ideas and suggestions or just be more approachable. Members of the forum find that their rheumy nurse is often extremely helpful and feel safer knowing that they can call her if worried about anything. She has contact with the consultant or doctor and can often pulls strings to help get an earlier appointment or come back to you after asking the medics advice.
Your GP may well ask the consultant about medication if not sure but many of us get scripts from via the gp for pain and inflammation. Worth a try to get the ball rolling. You could make suggestions if you have heard a medication works well otherwise see what he suggests. Play it by ear.
Elna xThe happiest people don't have the best of everything. They just make the best of everything.
If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.0 -
Wow....I would start stamping my feet (not literally cos it it hurts) about this. I must admit my experience of Psoriatic Arthritis is....GP just about OK but always looks a bit frightened when I start talking about the DMARD drugs in particular, GPs and hospital not great at shared care (I have to have blood tests in both places as they don't seem to share info), Rheumatologist fairly good - just seen me within 3 days of a major flare up - but can be grumpy If I see him just before lunch, Rheumy Nurses fantastic both on their helpline and in person. I see the nurses quite often at the moment (every 6 weeks or so) and the consultant every 6 month unless there is an emergency. Lucky old me....I get to have a blood test at the hospital every 2 or 4 weeks but this is due to them messing with my meds at the moment, it's normally every 3 months. I clearly have my problems but I still work, drive (well mostly) and I can write more than a few words with a pen - if necessary. I think, if I were you, I might start demanding a little more attention. I am sure the nurses will be a great starting point to share your problems, I find they do quite a bit of 'shouting' on their patients behalf and are good sounding board with a little more time to listen. Good luck and start looking for alternatives.... a new consultant perhaps....0
-
Hi, MooNoo. So sorry to read that you're having such a bad time. I find it helps when I see my GP to write everything down before I go - which means I don't forget anything. I list my symptoms and also the questions I want answers to, particularly as I make sure I've done my homework before I go. Also, I wondered if you had anybody who could go with you to see your GP/Consultant, mainly for moral support - preferably somebody who knows you well and who understands what you're going through.
I do think that sometimes we have to be more assertive than is, perhaps, in our nature. I hope that things improve for you.
Meg0 -
Ask the GP about your other problems by all means but use this appointment with the rheumatology nurse to get to grips with the lack of medication thing. Your GP can't prescribe DMARDS except as directed by the consultant. He can only dish out pain relief and anti-inflammatories and, although you may need them, you still need DMARDS, or at least a good explanation of why they're not being prescribed.If at first you don't succeed, then skydiving definitely isn't for you.
Steven Wright0 -
Hello Moonoo and a warm welcome from me
You do need to make yourself heard , you go back and do just that ..you should be left like this to struggle on with no proper medication..I do wish you well with everything and please let us know how it goes.
The one thing I have learned for this forum is to get across how you are suffering because they don't have your pain...and are treating many patients...Love
Barbara0 -
Hello again, MooNoo, I hope you are feeling a little better / brighter about things this morning now that you know we are here to listen. Over my arthritic years I have learned that it's not much good being a shrinking violet and not wanting to cause anyone any bother; my view is that the doctors are there to help and they should. I changed my rheumatologist after a couple of years of getting nowhere - I'm now nine years in with the current one and she is doing her best. I don't bother my GP with the auto-immunbe arthritis and I don't bother the rheumatologist with my osteo but I will bother people when I need to.
Arthritis is both demoralising and debilitating. I think one of the biggest propblems we face is that we get so used to stuff being rubbish we don't necessarily realise when it's unreasonably rubbish and that things don't have to be that bad. The meds rarely effect a 'cure' (i.e. controlling the disease to the extent that it is quelled and life returns to normal) and we are unusual in that we go and see the docs repeatedly, take pills and / or injections and don't get better (unlike other patients) but I think you do need to be standing up for yourself more, making a polite fuss but being implacable about what you want. We'll be behind you. DDHave you got the despatches? No, I always walk like this. Eddie Braben0 -
Hello & welcome MooNoo,
Blimey ure certainly being put thru the medical ringer
I totally agree that you need to be more assertive (I do too, it's hard) & you really should be on a DMARD to try & slow the disease not ignored!! :?
I hope you can get some help with ure other probs too. Chasing pain around the body ... FM? Has that been mentioned?
Best of luck.xHealing Hugs
Debbie.x0
Categories
- All Categories
- 21 Welcome
- 18 How to use your online community
- 3 Help, Guidelines and Get in Touch
- 10.7K Our Community
- 8.8K Living with arthritis
- 100 Hints and Tips
- 214 Work and financial support
- 714 Chat to our Helpline Team
- 4 Want to Get Involved?
- 385 Young people's community
- 9 Parents of Children with Arthritis
- 43 My Triumphs
- 121 Let's Move
- 26 Sports and Hobbies
- 18 Food and Diet
- 244 Coronavirus (COVID-19)
- 20 Community Feedback and ideas
- 310 Chat and News
- 24 Val's Cafe
- 273 Chit chat
- 9 News
- 4 Tails From The Cafe