After some advise really please guys...

jackiel

Hello all, I am new around these parts and I'm after some advise really on a few issues.

Just to give you some background - I'm a 40 year old female who is a Type 1 diabetic using an insulin pump, have been diabetic for 30 years. At the age of 18 I was diagnosed with cancer, hodgkins disease (cancer of the lymph glands) I received 6 months chemotherapy and responded very well.

Since then I have as the years have gone on been diagnosed with various other illnesses, such as tendonitis, dupuytren's contracture, lichen sclerosus, asthma (mildly) depression, anxiety, early menapause due to treatment of cancer), infertility and my most recent addition arthritis ta da lol !

I initially saw my GP who suggested it was osteoarthritis, I had a further x ray (hands and feet effected so far) and this was confirmed. He offered me some gel to use for pain which has done nothing. I presented myself again to him recently as I had a really bad flare up and after reading so much regarding osteoarthritis and rheumatoid arthritis I was not totally convinced he has got the diagnosis right. I am also unclear on whether its 'wear and tear' arthritis or an auto immune related arthritis.

I go for an ultra sound on my hands next week to determine the diagnosis. I also have pain in my elbows which he has suggested is tennis elbow !!?? I fail to see how he came to this diagnosis, but anyway.... I have been offered no further care/advise/help. After reading some of the posts on here it seems many of you have had lots of further support and been given very good advise. I can't help but feel I am being given minimal support and absolutely no back up !

When I inquired about pain relief I was advised to use the gel, the gel doesn't work ! I am in pain daily with my hands, I can't open cans or jars, I've had my taps changed to make my life easier and I often struggle with the simplest of tasks. I feel I need some help with pain management and how to proceed really. Do you carry on doing tasks that hurt your hands or do you avoid doing stuff that puts a strain on them? I have got more information and support from blinking Google than my Doctor lol !

Obviously once I have a complete diagnosis I can decide what to do but until then how do I go about getting referrals and things?

Any help would be gratefully received, apologies for the long post I just thought it best you had some back ground on me !!

stickywicket

Hello again Jackie So, X-rays have confirmed OA in your hands and feet but you think it's a wrong diagnosis and you might have an auto-immune arthritis? I don't quite understand that. I have both OA and RA but my OA is the result of having the RA for many years before the appropriate treatment (DMARDS) was available. Unless you've had all this going on for some years before you went to the doc you'd be singularly unlucky to develop both OA and an auto-immune one together.

I'd agree that a gel, of any kind, is a very mild form of treatment. Is there some reason (I'm thinking of the diabetes and all the rest of your medical history) why anti-inflammatories or paindullers would be contra-indicated?

Tennis elbow isn't necessarily related to tennis but it's called that because tennis players get it a lot. It's simple a strain on the muscles / tendons round the elbow and, if you've been struggling to open jars etc. I guess that alone could have caused it. It's usually self-limiting but you could help yourself in the meantime by buying an electric jar opener and an electric tin opener. I couldn't get into anything without mine. I also have a gripper thingy for opening milk and fruit juice packs. The question of whether or not to do tasks that hurt your hands tends to solve itself really. In an ideal world – no but do plenty of hand exercises. In the real world there's no option. Buy the above aids for the really tough stuff then carry on as normal, has always been my solution.

If you need a Pain Management clinic your GP can refer you. Which other referrals were you thinking of? There's a lot of stuff here on self-management http://www.arthritiscare.org.uk/PublicationsandResources/Selfmanagement Some of it might help.

I think it's worth asking your GP if it'd be OK for you to have anti-inflammatories and / or pain relief but please don't google. A lot of stuff out there is pure fantasy. Stick to reliable sites such as this, Arthritis Research UK and NHS Choices.

Moderator – I think this thread has been inadvertently posted on the wrong forum. Would it be beter to move it to LWA?

jackiel

Apologies for posting in the wrong section that's a good start !

I was under the impression that it was either wear and tear or auto immune related ! Perhaps I have been given the wrong information then....

I am aware of tennis elbow and whats involved, I just found it strange that I mention I have pain in my elbows and with not even a look at them he suggests tennis elbow !

Thank you for the link, I will have a gander now.

He suggested if I was to be placed on Dmards that I would have to be closely monitored by my Diabetic Consultant as they consist of steroids (?) steroids and diabetes are not a good combo !!

I just feel my Doctor has not really been forthcoming with all the info and kind of given me a diagnosis and patted me on the head, like there you go get on with it!

I could almost understand that attitude if I was say 70 years of age but at 40 !! Really ?!?

Why has he mentioned Dmards if he thinks its osteoarthritis ? I thought Dmards were only prescribed for rheumatoid arthritis not for osteoarthritis?

This has been going on for a long time.

jackiel

Just to clarify - I have had diagnosis of osteoarthritis, I have constant flare ups, I just feel so confused as to the correct diagnosis really.

I feel I have rheumatoid as opposed to osteoarthritis. Hence the ultra sound scan on my hands being done.

The initial x ray clarified it was in my feet also. I have one toe with visible sign of arthritis. He initially suggested I had both then stated he had read the results of the x ray incorrectly !! Hardly instills you with confidence does it !

stickywicket

'Wear and tear' is a very misleading term for OA. OA is often, but by no means always, age-related. Apart from OA, however, there are about 200 types of auto-immune arthritis. Some of these helpfully give a positive rheumatoid factor reading in blood tests. Others don't. GPs sometimes seem to think that a negative blod test equals no auto-immune arthritis. Not so.

Re the tennis elbow thing – if your GP is fairly convinced you have OA he's unlikely to show much interest in new joints where it's apparently starting up as that's what it does and no-one can stop it.

DMARDs, to the best of my knowledge, don't contain steroids but, for auto-immune arthritis, steroids are often prescribed either with a DMARD or temporarily for a flare or in injection form for a particularly bad joint. If you want to know how other diabetics get on with them you could start a new thread (on LWA ) but maybe make it clear that you have Type 1 diabetes as that might make a difference. If you were prescribed DMARDs it would be by a rheumatologist, not a GP. GPs can only prescribe them as directed by a rheumatologist.

I hope the scan helps to resolve the issue.

dreamdaisy

I have an auto-immune arthritis and the joint damage caused has led to OA in some very useful joints. Although we share similar labels as arthritics how we are affected varies from person to person. My OA does not flare as such but it can become more painful (and frequently does). My auto-immune, however, does flare and I know when it is because I become exceedingly tired, ache all over as though I have the 'flu. The recent hot spell triggered the auto, now the temperature and air pressure have dropped the OA is back to the fore. Hey-ho. The meds for the auto do not touch the OA and little wonder, they have very different causes and of the two I much prefer the OA because it is far more honest in its presentation.

I think re-posting on the LWA part of the board would be a good thing, many people don't look in on here because of its title - hopefully a mod will move this one for you! GPs do not necessarily know enough about auto-immune arthritis but it may be worth asking for a referral to a rheumatologist if only to clarify that you don't have one of the 200 kinds. I wish you well. DD

jackiel

Thank you for taking the time to reply Dreamdaisy, much appreciated ! I have PM'd a MOD and requested my thread gets moved to the relevant section of the forum.

[Deleted User]

Hello
Thread moved as per request.

Mod B

LignumVitae

Has nobody offered a blood test? I'm also wondering if your meds would allow for a non-steroidal anti-inflammatory. That might give you relief regardless of which arthritis you have.

jackiel

LignumVitae wrote:

Has nobody offered a blood test? I'm also wondering if your meds would allow for a non-steroidal anti-inflammatory. That might give you relief regardless of which arthritis you have.

Nope, no blood test, I have had the minimal help and support I feel.

dreamdaisy

One of the problems with OA is its sheer ubiquity. There are between eight - ten million arthritics in the UK and the majority have OA. Your GP may be of the opinion that because you have it proven in your hands therefore the rest of it is OA too. You can request a blood test but even that may not be conclusive; there are around 200 kinds of auto-immune arthritis, it is a medical minefield.

Another area for you to pursue is contacting Social Services, they may be able to provide items to help you with every-day living. Mine installed better handrails for our stairs and gave me a raised toilet seat. If you have a disability shop near it could be worth a look round there to see what gadgets etc. are available. There is also a thread at the top of this board concerning tips and hints for making our complicated lives a little easier, that could be worth a read-through. It can be difficult to access the help we feel we need, sometimes we have to be 'demanding' which doesn't come naturally to many of us. DD

jackiel

dreamdaisy wrote:

One of the problems with OA is its sheer ubiquity. There are between eight - ten million arthritics in the UK and the majority have OA. Your GP may be of the opinion that because you have it proven in your hands therefore the rest of it is OA too. You can request a blood test but even that may not be conclusive; there are around 200 kinds of auto-immune arthritis, it is a medical minefield.

Another area for you to pursue is contacting Social Services, they may be able to provide items to help you with every-day living. Mine installed better handrails for our stairs and gave me a raised toilet seat. If you have a disability shop near it could be worth a look round there to see what gadgets etc. are available. There is also a thread at the top of this board concerning tips and hints for making our complicated lives a little easier, that could be worth a read-through. It can be difficult to access the help we feel we need, sometimes we have to be 'demanding' which doesn't come naturally to many of us. DD

Many thanks for your reply Dreamdaisy. I attended my pump therapy clinic today for my diabetes and raised my concerns there regarding my other ailments in particular this latest diagnosis, my diabetic consultant was quick to inform me all types of osteoarthritis are auto immune related ??!! Is that correct ? I am baffled with this whole auto immune business I tell you lol ! She also suggested rheumatoid arthritis usually affects the knuckle area of the hands - I have typical osteo arthritic symptoms as I have nodules. However my feet have it displayed in the main joint (common with rheumatoid sufferers) but have still been told its osteo in the feet !

She did however suggest she could refer me to a Rheumatologist but it would take far longer than if my GP referred me, so I have my ultra sound on Saturday this week so I will see from there.

Any ideas on the length of time you wait for the results for an ultra sound examination on your experience?

dreamdaisy

I wonder if she meant 'all types of arthritis' ? I think she's also incorrect with her comment on RA; with being a diabetes expert she won't know that much about arthritis in the same way that rheumatologists won't know that much about diabetes.

Having had auto-immune troubles since birth I don't find it confusing but I can understand someone new to it might. I was born with eczema and then developed chronic asthma aged seven. My body has been happily attacking itself (i.e. me ) by responding to triggers that don't bother others. My psoriatic arthritis is continuing that process, which is entirely logical; I am the genetic car disaster caused by my parents' desire to have a child, Ma's genes contributed the eczema and asthma, Pa's the psoriasis. Needless to say they weren't troubled by any of this malarkey.

It is difficult to know what to advise because I am not a doc and I don't have your conditions. My PsA began with an inflating left knee - PsA traditionally begins in the small joints of the hand and feet but mine didn't. If your joints are swollen and hot then there may be cause to refer you but if not then it is probably OA. DD

barbara12

Hello jackiel
I am sorry I have only just seen this,there seems to be so many people on hear struggling for a proper diagnosis, you should at the very least had bloods done to check for inflammation, arthritis is so complex I am in the middle of waiting for all my results after 4 years of OA and waiting to see a decent rheumy..at least if they come back with OA I will know were I stand..sometime we just need answers..I hope you get some very soon..

stickywicket

jackiel wrote:

my diabetic consultant was quick to inform me all types of osteoarthritis are auto immune related ??!! Is that correct ? I am baffled with this whole auto immune business I tell you lol ! She also suggested rheumatoid arthritis usually affects the knuckle area of the hands - I have typical osteo arthritic symptoms as I have nodules. However my feet have it displayed in the main joint (common with rheumatoid sufferers) but have still been told its osteo in the feet !

If all types of osteo are immune-related that's a new one on me. I think the latest research shows that there might be a genetic component to some forms of OA but I think that's it. Other forms of arthritis are auto-immune. You can learn here about the different types: http://www.arthritiscare.org.uk/PublicationsandResources/Listedbytype/Booklets

It's true that RA often presents originally in the finger joints. Mine did. However, that's usually, not always. RA can also produce nodules. My foot bones are all over the place. It started off as RA but the OA joined in too.

I'm sorry, I've no idea how long scan results take. It tends to depend on the hospital.

jackiel

Thank you people, will update this as soon as my results are in .

jackiel

Hope you are all well, apologies for the delay in reply, had a few issues.

Had my hands ultra sound scanned, results sent back to my GP, didn't really uncover any more info, but he has referred me finally to a rheumatologist for which I am extremely happy. He has also placed me on Meloxicam to act as an anti inflammatory as a stop gap before I get to see the rheumtologist, so I feel more confident at least that I am moving forward and can make some headway with this.

Anyone else used Meloxicam and if so did you suffer with any discomfort indigestion wise ? I have been warned but apparently it doesn't effect all patients the same way so fingers crossed !

dreamdaisy

I haven't taken that particular one - I am now on a combination of a stomach protector and diclofenac which works for me with very little trouble. Please ensure that when you see the rheumatologist that you tell him you have been taking this because it might affect your results in his tests. DD

stickywicket

I agree. Do ensure the rheumatologist is aware you're taking this as it will reduce your inflammatory count.

I've never had meloxicam. At the first sign of trouble please go back and ask for a stomach-protecting med to take with it. And always take it with food. If you'd like more info on this med you'd be better starting a new thread.

jackiel

Thank you so much for that advice, I would never have known that that particular medication would effect my inflammatory count.

stickywicket

It's a Non-Steroidal Anti-Inflammatory ie its purpose is to reduce inflammation. That sounds good (And feels it ) but it might make it a bit harder for a rheumatologist to check.

jackiel

stickywicket wrote:

It's a Non-Steroidal Anti-Inflammatory ie its purpose is to reduce inflammation. That sounds good (And feels it ) but it might make it a bit harder for a rheumatologist to check.

Wouldn't you think my GP would have suggested this :roll:

dreamdaisy

Suggested what? :? He has responded to the need to reduce your inflammation, and he may mention that he has prescribed this in his letter for the rheumatologist, but in my eighteen or so years of dealing with GPs and rheumatologists I tell everyone everything because I know that the lines of communication may not only be blurred, they could be non-existent. It's a habit that's worth establishing because although we think we stand out in a crowd of patients, we don't. DD