Felt like throwing the towel in

[Haz58]

This morning I just wanted to give it all up. Still waiting for my referral (the 3rd one...see other posts). If ive not heard from the hospital on 20th October to call them as per before, as per their letter I git last week.

My feet aren’t too bad at the moment, not so bad with the ‘walking on pebbles’ feeling for a couple of weeks now. But the bones in my knees, down the front of my legs and even my sternum and the area around my breastbone hurts. In fact most of my bones just ache or are painful.

Taking Zapain when I go to bed, but then 4 hours later get woken up with leg bone and knee pains.

So I take another one so I can sleep again. I’ve always been so active, i was so depressed first thing, cried on hubby, felt useless.

I have Amitriptyline on repeat ftom sciatica a couple of years ago but haven’t taken it for a few months. Now I’m wondering should I try taking it for this bone pain to try to see me through?

Does it help anybody else?

My doctors are useless at the moment, all telephone consultations, it’s just not the same trying to explain how I feel over the phone.

Would you advise me to call them tomorrow even though I’m waiting to see the hospital?

This has been going on since January. It’s just getting to me big time now.

[Pognose123]

Haz, I haven’t seen your other posts but I know you shouldn’t be fighting this alone. I am assuming you have not got a rheumy team/nurse yet so your only place is GP. You need to get the pain under control - before my first consultation appointment was through my GP tried to help with pain to tide me over. I’m assuming it is your GP who referred so will know how long you have been struggling. You have to keep banging on doors to be heard - even if you are under a consultant you still need to bang so get into the habit now.

Please get medical help.

Look after yourself x

[Haz58 in reply to Pognose123]

Yes it was my GP who referred. The first time was in January then lockdown hit us. Then in a July my feet were bad so I got to see a GP and had bloods done. My RA factor had sky rocketed. They gave me Zapain for the night and 10/500 co-drydamol for the day as lots of codiene makes me sleep. They also wrote again to the hospital.

In September I had the same letter I had last week. I rang them on the 3rd as it said and they said my referral had been cancelled as they had asked for some more info ftom my GP but they didn’t get it, my GP just resent a copy of my referral form.

They put me on Naproxen but I ended up in A&E with breathing problems and Naproxen was blamed for this so I had to stop taking it, I also have Gastric reflux so Naproxen isn’t good for that either.

I’ll do as you say and call the docs tomorrow. I’ve not had anything like this before so find it hard to keep pestering the docs. Looks like I’ll have to learn!

I just get so down now. That’s not like me either. Pain and tiredness do not go well together do they.

Thanks for replying, I feel so alone in this sometimes. It’s good that I found this site as it helps to get the feelings out. Xx

[Pognose123 in reply to Haz58]

I think a lot of us hate ‘bothering’ Drs - or used to, because we have all had to learn to be politely assertive (or as polite as you can manage). Sometimes just getting past the receptionist can be a challenge and don’t talk to me about the practice nurse (who told me to go away and take paracetamol - a week before I had my blood test that showed me off the scale 😔 it sounds like a messy journey you are having and very frustrating.

Ranting on here is safe and although we can’t help much we can give moral support 👍

I feel grateful for finding everyone here too 👍

[Hidden]

Keep fighting. Have you contacted NRAS they may have some advice.

Wish I could help more please keep in touch . Might not be able to help but can listen x

[Haz58 in reply to Hidden]

Thanks J1707. No I haven’t actually. Never thought to do that. I’ll call the doc tomorrow then contact NRAS if I get nowhere.

Thanks for listening it helps. Xx

[medway-lady]

If you've got Morton Neuroma's it is exactly like walking on pebbles then speak to GP about seeing a Podiatrist for a steroid injection. But sorry they don't always work. So in these difficult days I'm sorry but only thing I can suggest is rolling your foot over a bottle of cold water and don't stop walking on it as it'll make the problem worse. As for the RA Its phone appointments here too but it does seem to be working, and I don't think depending on where you live I'd actually want to go to a hospital unless it was an emergency.

[essexgirl]

It seems to me it’s a postcode lottery for treatment

[Biofreak]

Oh Haz you are really going through it. You really need to see a rheumatologist but phoning NRAS as j1707 suggests is a good idea. Explain to them what has happened and get their take on it. Your GP sounds useless (a lot like mine). The pain down the front of your legs can I ask do you mean your shin bones? The reason I ask is I had a condition called shin splints which is the name physiotherapists use for posterior tibial tendonitis. Mine was caused by me putting all my weight on my left leg because I was trying to take the weight off my right foot where I had a broken toe. I know you mentioned you were having problems with your feet because it felt like you were walking on pebbles. You may have created a compensation injury as a result of trying to walk on painful feet. It's only a guess based on my experience. In my case I went to see a physio who gave me exercises for it and used sports injury tape on my tibia. It was actually the physio who diagnosed it. The other thing he recommended was using a pack of frozen peas wrapped in a t towel and resting it like an ice pack on my shin. My GP didn't have a clue. However, I'm not saying this is the same for you, it's just a suggestion.

[Haz58]

Yes it’s my shin bones. I’ve been having the pain for a couple of weeks now. When I walk for more than 15 minutes, say at a park etc, I get pain in my toes so yes I could be compensating fir this pain I guess.

Thanks for this. At least I have a name I can throw at the doc now.

I’ll try the towel with ice too, see if it helps.

[Biofreak in reply to Haz58]

The name of the tape is Rock Tape but I had the benefit of the physio who showed me how to do it myself. My toe obviously healed and so I didn't need to transfer my weight then. But the physio also recommended insoles for my shoes because my feet turned in a bit and the insoles straightened my gait. My Mum who also had RA also described walking like walking on pebbles and she used to virtually walk on her heels. She had special shoes made by podiatry when she was referred by rheumatology but hers were an extreme case. That was many years ago though when there weren't as many treatments for rheumatoid disease. I hope you get to see a rheumatologist soon because that is what you really need.

[Haz58 in reply to Biofreak]

After your message I found a long piece of elastic bandage and cut it in half. I’ve had it on both shins from my knees to my ankles for a couple of hours now and the pain isn’t as bad at the moment.

I’ll see if it makes any difference tonight when I’m in bed. But it definitely feels supportive at the mo.

Fingers crossed, maybe like you said I’ve hurt them by trying not to walk on painful toes. Fingers crossed! X

[Biofreak in reply to Haz58]

Don't have it too tight though Haz. Don't want to cut off your circulation. Xx

[Haz58]

Ok thanks Bio, not marking legs so seems to be ok. Not sure if it’s the warmth that’s helping or a bit of support to be honest. Xx

[Biofreak in reply to Haz58]

Probably both. X

[Kags1068]

Hi Hazel

I've just noticed from another post that you live in Coventry. Are you waiting to see a rheumatologist at Coventry hospital (UHCW)? If so, that's the hosp I attend for rheumatology. Things seem to be very up in the air there at present. My lovely rheumatologist retired in July and there is no replacement and no idea when there will be. They are also I think, possibly another 2 consultants down as people have left. I asked to be transferred to another consultant rather than be "minded" by my old Consultant's secretary! It seems very difficult to get appointments (and that's just phone appointments).

If you are waiting, it might be an idea to chase it up so you don't get forgotten. If you do happen to know the name of the Consultant you've been referred to, you could phone their Secretary direct. I've just had to chase an eye appointment that I should (apparently) have had urgently about 9 weeks ago, but had been "missed." I have (fingers crossed) managed to get a f2f one for next week now so it was worth the hassle.

Hope that might help a little. Apologies if you've already done all these things and I haven't realised!

Best wishes 🙂

[Haz58 in reply to Kags1068]

Hi Kags. I have to wait until 20th October before I can call the hospital. I had a letter saying they were reviewing my referral again and if I’d not heard from them by this date to call them.

My doc said he thinks they are trying to bide time by cancelling referrals if they don’t get info they want promptly! If they are struggling with consultants maybe he’s right as if they cancel referrals it gets you off the waiting list. Not a great situation is it.

[Kags1068 in reply to Haz58]

Oh dear, no it's really not a good situation is it? Unfortunately it sounds like your doctor's theory about cancelling referrals may well be right. I'm sure you don't need me to say this, but please do phone if you haven't heard by 20th October. I suspect that at the moment there is a reasonable chance it may get "missed" again. Again forgive me if this has already been discussed, but if you are struggling, is there any chance your GP might give you a short course of steroids or even a steroid injection to tide you over and give you a bit of relief while you are waiting? I say this because I have read about other site members whose docs have done this whilst they are waiting for an appt.

[Haz58 in reply to Kags1068]

Thanks so much kags. I’ll definitely ring on the 20th if I’ve not heard. Then I’ll take it from there.

Xx

[Kags1068 in reply to Haz58]

You are most welcome. Do keep us posted and good luck x

[Haz58 in reply to Kags1068]

Hooray I have a hospital appointment for 16th November! X

[Biofreak in reply to Haz58]

Fabulous Haz. You could probably do with it sooner but hey at least you've got a date. Now, in preparation, I would write down a sequence of events (when it started, how its developed and changed since) leading up to where you are now along with where it hurts. Any family history of similar problems and your own medical history if there's anything significant. Lots of people on the forum say its useful to do this because when you are in front of the consultant, quite often, your mind goes blank or you forget things and kick yourself later. Don't play anything down so he/she gets a complete picture of how bad it is. I'm probably teaching Grandma to suck eggs but its worth saying. Good luck Haz.

[Haz58 in reply to Biofreak]

Great idea! Thanks Bio! Problem is where to start lol I’ve been in and out of the docs with pain for a couple of years. I guess I take it from when the doc first mentioned RA? Which was January.

[Hidden in reply to Haz58]

Just make sure you have a summary of what has been happening in diary form and what is frustrating you and what drugs you take now and past and what has or has not worked etc. Just so you don't forget!

[Biofreak in reply to Haz58]

Hi. I would still mention the fact that you have been struggling for 2 years though. Everything you say will give the rheumatologist a clearer picture of your symptoms and the kind of problems you have been experiencing.. I had been struggling on and off since 1997 and was only finally diagnosed for definite in 2004/5 by which time a fair amount of damage to my joints had already been done. My problem was I looked fine but felt terrible. My bloods didn't show up inflammation but fortunately for me the rheumatologist didn't only look at the bloods but based her decision on how I felt and my descriptions of the pain I experienced and the difficulty I was having.

[Kags1068 in reply to Haz58]

Excellent news - I'm so glad you have heard from them. Does it say which Consultant it will be with, or whether it's f2f or telephone? (Either way I guess it's a start)! Biofreak and Deeb have given you some good advice on preparing which I'm sure will be useful.

Just one nosey question if that's ok?! I notice you said you can see your medical records online. Is that GP records, hospital records or both? Is this something that lots of docs/surgeries do now and if so, how do you access it? Apologies if that's too nosey or personal! If so, please ignore😊 x

[Haz58 in reply to Kags1068]

Hi Kags. Consultant is Dr Gillian Peffers. F2f appointment. At my surgery I can log onto a website called ‘Patient Services’. I can book appointments, request repeat prescriptions with ‘ordinary access’. Then you ask for a pass code from your surgery for further access to see your blood test results and dates, dates of appointments with anyone at my surgery and a short note as to what they diagnosed. I think it’s your GP records only at the mo but I know the NHS are preparing to unite all of a persons info in one place to save people having to repeat themselves at different kinds of appointments.

You can also go onto the NHS website and sign up to their similar thing but I’m not sure how detailed that is, worth a look though.

Just ask at your surgery if they do anything like it.

Be as nosey as you like if it helps you lol x

[Kags1068 in reply to Haz58]

I'm very pleased you have a f2f - they seem to be like gold dust atm! I've never met Dr Peffers, but I do believe she's been there a while now, so I would take that as a positive! My next appt is in November and I thought it was to be a f2f but it's come through as telephone one. I honestly don't know if I can be bothered to contact them as when you are feeling a bit tired, etc it can feel like a battle too many! I haven't yet met my new Consultant which is why I was hoping for an in person. We had a very brief phone appt last time and although I admit I'm not always very good with change, I felt a bit disappointed. He hadn't looked at my records, just the last clinic letter and only seemed interested in complaining about me having too much medication, but not letting me explain why! Every time I tried to say something he just said 'I'm not aware of that," but didn't let me explain. I'm trying not to judge him on that one chat, but it does dent your hopes a bit! Anyway, sorry about that rant - been holding onto it for a few weeks!😄

Thanks for the info re accessing results from doctors. I'll try and look into it. You'd think after 38 years of rheumatoid I'd be on top of all these things, but apparently not! Sometimes I think I'm still stuck in the 80's rheumatology wise! 😆😆

It really does help to share stuff with others!😄

Best of luck with the appt- it's good to have a date to work towards and I'm sure she'll be very helpful. Do let us know how it goes.

Take care x

[Haz58]

Thanks Deeb. Luckily I can see my medical record online so I shall make a diary from that.

This site is so helpful, I’m so glad I found it! X