Please need advice

[jayuk]

Hi everyone hope your holding up in the heat, I really need some advice.. I went to doctors about results from knee x ray and he said I have oa in knees only mild, if this is mild dreading when it gets worst then.. I spoke to him about could i have it in my lower back as i have had bad back for years. He said oh yes there's a possibility, I also mentioned about the stiffness and he basically was off with me asking what I wanted him to do. I didn't say anything as I was unwell with the flu and just ended up leaving it there. I came home and now I think was hasn't he done more investigations would it be to know if it is in my lower back and neck even hands as 2 of middle fingers have lumps at the side and slightly slanted... Feel so down as I'm currently on sick for a achillies injury and returning back to work next month. I struggle day to day and the thought of going back to work knowing I'm going to be more shattered. I have other health conditions, under active thyroid, fibromyalgia, b12 and folate defientcy and now oa. I've read about pip but been put off applying with the horror stories.

[tselph]

Have you asked the doctor if you could have anchylosing spondylitis? That affects ligaments, tendons, spine, & SI joints. I was looking at all the information on it because I’ve been having some of this same problems.

[kohai OA Ambassador]

Hi jayuk,

Firstly, welcome to the OA community

With OA, its not selective, the chances are, if you have it in one knee, you'll more than likely have it in all joints.

When you're feeling better, go back and see your doctor. Yes, x-rays will detect it, but a more valid way to get a result, and a qualified name attached to those results, is to ask to be referred to a rheumatologist.

This way, not only do you have a clear, straightforward diagnosis and idea of just how far the OA has spread, if you do need to claim PIP, you'll have something more substation to show them, as they won't always go by a doctors letter alone.

Ok, PIP - If you do decide you ha e no other option but to claim, get as much medical proof as you can.

For example, you don't need a doctors referral to phone the hospital O.T department. They can arrange to assign an O.T to you, she/he will then arrange with you either to come to your house, or for you to go see them, its entirely what suits you best remember that.

(I'll come back to PIP in a moment)

So, the O.T can supply you, for free, a large number of things, ranging from devices like hospital bed, wheelchair, variety of walking sticks/aids, frames..

They put you name forward to people who can supply you with a raised toilet seat if you find getting off your own causes excess stress on your lower back and/or knees.

The O.T writes to a company, they then get in touch with you by phone for the best time to deliver, same with all equipment they can supply you with, so you don't have to go and collect anything. The other good thing here, is that they replace anything broken, take back anything you no longer need (so its not cluttering up your home) and they do maintenance on anything electrical they supply you with.

They may ask you to go in if they offer to make you hand braces, this is only because the material they use needs to be heated up in water, moulded to the shape of your hands, then put back in the water to reheat again if its not quite a good fit.

Many lumbar or cervical (bony part at the top area of the spine) braces can be brought on ebay for under £5. but please, please check on ebay for something new before going somewhere like LTC Mobility.

I don't really like disrespecting companies, especially publicly, but you really can get everything they sell, brand new for a quarter of their price on ebay.

One thing the O.T can't supply you with, is a TENS machine. These machines are literally a one time purchase, and again, ebay sell the pads that go with them in a variety of tiny to large pads, brand new for less than £5. for a big pack that'll last you a long time.

So.... That's a doctor, a rheumatologist, an O.T, physio may help, but it depends on how far along your OA is. Those three specialists alone can provide enough evidence for you to show the PIP.

Back to PIP - I cannot offer any guarantees here that your claim will be plain sailing, but though, as you said, you've heard a lot of horror stories, let me tell you one that isn't.

Remember, you 'are' allowed to quiz them too, its not all one sided.

I got myself a book for £18. (if was this price for me as I was already in receipt of PIP when I brought it).

Its called Disability Rights UK. (same as their website, take a look, the information on there will help you enormously with claiming what you're entitled too, and more).

The book takes you through, step by step, every thing you need to know about making a claim, but the beauty of this is, it also gives you "What if" scenario's. Like, what if ... they want more information?

What if... I can't make their interview time? What if.. they penalize me for having to change the appointment ? A whole host of What ifs.

So I already knew when the person turned up, that it had to be either an RGN, an O.T, a Paramedic or a doctor.

The person I saw was training, so she had someone with her when she came. You are allowed someone with you too, whether they interview you in your home or at an interview centre.

As she sat there, right before she spoke, I looked directly at her and said "Before we start, can I just ask you what profession you're in?",

Now I hate confrontation sooo much, and will go out of my way to avoid it, but like you, I'd also heard horror stories, I was however armed with the info I'd learnt from the Disability Rights website.

She actually looked speechless at me, then in quite an annoyed tone, she said "I'm an RGN", my stomach was churning the entire time, how I kept previous amounts of coffee down is beyond me!

The interview actually went well, I think mainly because I'd pre-read on the website mentioned, what proof I'd need, what questions I could expect to be asked, wag I was within my rights to ask the interviewer, how they may ask to check my balance by asking me to stand just on my left foot then on my right (to see how steady I was then) but I made sure to say "Sorry, but I need to hold on to the banister rail or I'll fall over, my knees hurt and tend to give way, I don't want to injure myself by falling while doing these tests"

Read back what I said to her ... You see?

They aren't going to ask you to do anything that may cause you to fall and injure yourself, because they fear the possible threat of legal action more than anything.

If there is anything I've missed or you want to ask me or the OA community, please feel free, we're here to help you as much as we can.

[jayuk in reply to kohai]

Thankyou so much for the information this will help me so much. The doctor is referring me to rheumatologist, I also had my blood pressure taken and was very high 189/79, i have to have bloods done and ecg,she has sent urgent request for me to be seen at hospital by heart clinic. It never rains it pours .

[kohai OA Ambassador in reply to jayuk]

You're very welcome I know I wrote a lot in my last post, but there were a lot of areas and options open to you that I felt you could benefit from knowing about, and the people and website information that could provide even more. Hopefully there was something in what I wrote that you feel may be of help to you, now or in the future

It shouldn't be too long now before you start getting results, and you'll finally get a correct diagnosis from a rheumatologist.

One really good thing about seeing them, is that they do actually "talk to you and discuss everything with you". So when you come away, you'll have an answer. You don't have to wait until they write to your doctor weeks later, where you're constantly checking with the doctors' receptionist to see if the letter has arrived just so you can make yet another appointment to hear the results.

Will you post again after you've seen the rheumatologist anInlet us know what's happening?

If in the meantime you do have any more questions or queries.... or even worries and concerns, please do post again

And remember, this community is, and will always be here for you to help in any way we can.

I am really happy for you that things do seem to finally be moving forward for you now

Is this what you wanted from your doctor when you went in to see him during the time you had flu?

[jayuk in reply to kohai]

Thankyou the information you gave me will really help me as I didn't know anything and you have helped me to know where to turn when I need help.... As soon as I get appointment from rhymatolagist and have answers I will update. Kohia when I went to doctors I did want him to refer me but he was going on about you have fibromyalgia and like thats what was causing the stiffness and back pain. It's like he thought I was in denial,don't think I can be in denial after 4 years with it.

[kohai OA Ambassador in reply to jayuk]

Ugh!

So you're aware, while a doctor can diagnose several things, Fibromyalgia is NOT one of them. A doctor listening to symptoms cannot go on those symptoms alone to make such a diagnosis, especially a doctor who until now, from what you've said, has been very slow and/or reluctant to do anything for you.

The main reason a doctor would suggest it, is if the test results (from all other tests) rules out things like M.E, Fatigue, arthritis, MS, blood tests etc. Most of these require x-rays, MRI scans, various blood tests.

While a rheumatologist may suggest Fibromyalgia, its generally only after ruling out rheumatoid diseases first.

Read this from the NHS website, it'll give you a clearer idea of what Fibromyalgia is, how/where it affects you and the signs and symptoms. See if any relate to what you're feeling... but I would advise that you not accept what your doctor has said until you've been seen by the rheumatologist (and told her/him what your doctor guessed at), and all of the other test results are in.

If you spoke with most chronic pain patients, a huge majority will confirm how their doctor(s) just don't listen to them, or hear what's being said to them.

The amount of chronic pain patients who have been made to feel, by their doctor, that its psychosomatic (imaginary/all in their head) is astonishing and extremely worrying.

A quick example of how quickly a doctor can change diagnosis without a second thought for the patient ;

* About 5 weeks ago I passed out while sat on my bed. When came round, the bottom left lip, surrounding cheek, chin and jaw was numb. A kind of tingling like we get as the feeling starts to return after a dental unaesthetic. Only for me, the feeling wasn't coming back.

I saw just two of the doctors at the surgery I'm registered with.

I had a phone call with one first....Doc A (who is the head of practice) says "Its shingles and definitely not a stroke or short lived stroke (known as a TIA)."

After I told him I've had stress related shingles since 1998, and nowhere near my face, he suddenly changes the diagnosis after saying "Oh in that case, its not shingles, it must be Trigeminal neuralgia"

(which I had to google. Its facial nerve pain)... but I was in no pain at all with it! Sure it was annoying I either to drink through a straw or dribble everywhere, but other than numbness, no other symptoms.

He wasn't sure what to say so ended with "if its not improved by middle of next week, come back in and I'll order an MRI"

I went back the following week only to be told he was busy with a learning difficulties patient, so I was to see another doctor... I'll call her Doctor B.

Doctor B answers directly to doctor A, but even after reading his previous notes, and hearing me say how I'd been seen by a stroke specialist a year ago when I had a more serious stroke, doctor B ignored notes from doctor A, basically called the stroke specialist "an idiot who didn't know what he was talking about", she then completely ignores me sat there, makes this long phone call, only stopping to talk to me while she's been put on hold, to say "Thesis very serious! And I don't want to wait the mandatory six weeks for you to have an MRI, is I'm having you admitted to hospital now"

(wow! 2-3 weeks after the event and she goes into full panic mode!).

So between two doctors, I get;

1 diagnosis ruled out and another 2, completely different diagnosis made randomly in a phone call -

Then get the previously ruled out diagnosis re-diagnosed!

(All because of half a numb lower lip and no pain or other symptoms with it).

I'd just prefer you use caution with a doctors diagnosis on something that can be pointed at by a 'lot' of tests, but as far as I'm aware, there still isn't one clear 100% test that can diagnose Fibromyalgia.

In my own personal opinion here, I think it was wrong and unprofessional of your doctor to come out with such a diagnosis, more so when he still has virtually no test results from anything to back him up.

Wait till you see the rheumatologist as ask then. Let them know what your doctor has said, and that no test results had come back when he said it - then see Howe rheumatologist reacts to that.

I'm sorry I couldn't be more help with this

Also, my apologies on behalf of my phone, which likes to randomly change words I've typed 😒

While I do have a high standard of English Lit and Language, if the dictionary on my archaic phone doesn't recognise words, it'll change them for words it does know - thus leaving my posts full of typos.

[jayuk in reply to kohai]

Hi thankyou again kohai. rhymatolagist did diagnosed me with fibromyalgia a good few years ago but I still wasn't sure I had it as I didn't hit all the tender points and consultant sat and explained to me and also said there's a connection with Under active thyroid. I know that I have oa in knees and also have nodes on middle fingers just hoping that they will investigate and not be fobbed off. I went for ecg on Monday at GPS and that came back abnormal also had blood tests . wasn't told much on Monday was just once the blood tests come back then they would have a better idea. Well i got appointment this morning and Dr has said that all blood tests came back okay and that the ecg had a few blips in there and as there ecg only goes for a minute or two that it doesn't give a clear reading it could be something or nothing and I'm awaiting a appointment from heart clinic. Also she is going to have me have 24hr blood pressure test which I have to wait for one to be available from surgery. Kohai that's sounds frightening what happened to you. How are you feeling now and have they said what it is.

[kohai OA Ambassador in reply to jayuk]

Hi jayuk,

Firstly, I need to apologise for not being able to answer as soon as I would have liked.

With what you've said about the rheumatologist, enough time, and deterioration in your health for you to ask your doctor for another referral back to the rheumatologist.

From what you've said, there wasn't enough conclusive evidence for them to give you a full, accurate diagnosis last time, and it sounds like

now, there is! (which is good news).

Many members here, and the other groups on HealthUnlocked can confirm that is "will be" a constant struggle and fight now.

WE know our bodies better than anyone, so even after you finally get the diagnosis/diagnosises you've fought and waited to get, if anything else happens (like the nodes you mention), we all feel we're back to square one with "convincing the doctor to give you a "specialist" referral.

Don't give in and don't give up!.

Its hard enough that we have to fight so hard, and many, for so long, just to get a specialist to put a name (or names) to our conditions, but we then have to go through what I refer too as the "Guinea pig phase".

(while 'Lab Rat" could also be used, as that IS how many feel they've become, I don't personally like that terminology).

Its basically where, after the specialist(s) have named what we/you have 'in total', the doctor takes over and the long, often extremely emotionally, mentally and physically awful path begins of finding one or more medications that control the condition(s).

As many doctors start with a low dose, then gradually increase the dose, one thing that can be helpful is a daily diary.

Times you take your medication, how long is it taking before you feel its effects, side effects, is the medication, at that dose level, managing your pain or are you experiencing more pain between doses (referred too by doctors as "break through pain".

Just write down facts, then take that with you to every doctor and/specialist appointment you go too.

That info will be invaluable to them because its all they have to go on, it know at each stage, or dose increase, not only if the drug(s) prescribed are working, at that dose, but if they need increasing, decreasing, or changing completely for something else, if its/they're not helping.

In order to change medications -

*sorry, I should have said "before they can try you on something new*, so have to gradually lower your doses before starting you on the new one, otherwise the mixture of certain doses of medication in the body at the same time can be dangerous, or lethal!

Thus as doses lower, our pain increases.

Let your doctor know as soon as possible if the pain becomes too unbearable though, he can give you something for the "between meds change" pain. Hence "Guinea- pigs,", that phase where doctors spend their their time trying us/you on different meds.

* Important;

If you can't get an appointment quick enough with him, ask that he phone you back urgently! or leave a message for him.

I am sorry if I'm telling you everything you already know, I've just always found it easier to explain from the beginning, so someone can follow, rather than make assumptions that you already know, which could easily end in you, (or whomever reads this in the future), and ends up more confused.

So, I really am not trying to be patronising, its a little difficult to try and help or offer advice when I have no idea what you do and don't already know.

Two more quick things;

1. I know I write long posts, its because I'm trying to cram in as much info, advice or help for you as I can, in one go, because as you'll see in point 2, between the unexpected and the on-going, constant spinal spasms, I never know when I can get online again.

(Please 'never' feel I'm ignoring your posts or have abandoned you though! That's not me or what I'd ever intentionally do!

2. My sincere thanks for asking about my health, even though you're going through so much yourself!

* For the past two months, I firstly spent every day, 5 days a week with the Clinical nurses at my doctors practice, then every 2 days (3 times a week) at the Burns Unit having a 16cm across, 13cm in height 1st degree burn above my right knee treated, as well 42cm long × 16 - 20cm wide on my left leg.

So all of the appointments left me quite drained.