Just need to talk

[OneLittleSpark]

Hi everyone. I don't really know what I hope to achieve by writing this, I just felt I needed get some feelings out or I'd explode. I've had joint pain on and off for a number of years now, but since October they've been so bad that I'm now using a wheelchair outside of the house. I've never, in all these years, got to a diagnosis. Previous flair-ups have eventually cleared up by themselves, after I'd been shunted out sideways through the NHS, normally to a physio (this isn't a criticism of PTs, they do a wonderful job, but they can't be expected to cure a problem that they don't even have a diagnosis for), but this lot just isn't going to go away by itself.

I've had an X-ray, which showed nothing, and I've just (after much chasing) found out that my blood test results for rheumatoid arthritis 'probably don't show anything' (I talked to the consultant's secretary, who said that blood results are only sent to your GP (translation: MD) if there's anything wrong with them. If everything's clear, they don't tell you ).

So I'm now waiting for an MRI (which thankfully isn't too far away) with no idea of what's wrong, or what I should be doing. I don't even know if I should be exercising as much as the pain will permit, or resting. I've been told that if the MRI doesn't show anything, I might be sent back to a physio, but that won't get me any closer to a diagnosis. Without a diagnosis, I don't officially have anything wrong with me, so I don't get any help from the NHS. I've got supportive friends and family around me, but they've got enough on their plates without me burdening them more, so I just end up bottling it all up until I'm crying at the computer like this. Ho hum.

Thanks for listening everyone, and sorry it was so long and rambling.

 

[Claire L]

Hi and sorry to hear things are going badly for you Did you ever get a referal to the pain clinic at your nearest hospital? If not please do look into it as they may know what is wrong or point you in the right direction, failing that is there anyway you can pay for an initial visit to a private hospital yourself if your GP agrees it may be of help to you?

Take care

Claire

 

[OneLittleSpark]

Hi Claire. I talked to the GP about it, he nodded, agreed that it might help me, then did nothing further about it. I'm going to make an appointment with my own GP (for some reason my referral letter went to a different GP within the same surgery) to see if she can sort an appointment with them for me. I have considered going private for this, but I don't know whether it'd actually be much better than waiting for the NHS. If my GP thinks a pain clinic might help, but I can't get a referal, I will look into the private route.

I just feel like I'm living for one appointment to the next at the moment, never getting any closer to a diagnosis and not getting any help or support from the doctors in the meantime. I just want a name for what's wrong with me; if I have a name, I know what I'm dealing with, I can find a way to fight it. Without a diagnosis, I have no plan of attack, I feel useless.

Thank you for the support. I do feel fairly alone sometimes, and it's good to be reminded that actually I'm not alone at all. Thank you .

 

[hematite153]

Out of curiousity, has your GP tested Fibro pressure points?

Otherwise, I agree with most of the advice others have given you. Try hard to get that referral to a pain clinic. If your own GP also nods but does nothing respond bluntly and directly, "can I please have a referral or a prescription for a referral?" Then, don't leave until you get it!

You may also want to ask for a referral to a rhuematologist.

Good luck!

 

[OneLittleSpark]

I'm seeing rheumatology at the moment. The bloods have come back negative, and I'm waiting on the MRI. I think my GP will give me a referral if she thinks it will help, she's a very good doctor and I have a lot of confidence in her.

I've not been tested for Fibro pressure points, no. Please excuse my ignorance, but what are they?

Thanks for the support guys, it really does help me get through the day knowing that there are many, many kind and caring people out there.

 

[Mackey Mouse]

I am so glad that you posted and hopefully those with some experience will try to guide you in the right direction. It must be so frustrating to be in pain and not be able to get answers. I do know little about the health system in the UK, and when my daughter lived there for 3 years, they did search out private doctors, but of course they were ex-pats were able to go that route.. although expensive for them as they would pay part of it themselves..

I hope you find some answers to the pain and we are here for whatever advice we can give. Unfortunately, I have no answers this morning, just sending lots of comfort your way.... Please let us know how you are doing.

 

[hematite153]

I think my GP will give me a referral if she thinks it will help, she's a very good doctor and I have a lot of confidence in her.

I've not been tested for Fibro pressure points, no. Please excuse my ignorance, but what are they?

I'm glad to hear that you have a good doctor.

The problem with fibro is that many GPs think it is psychosomatic despite extensive evidence to the contrary. It cannot be easily pinned down, it is different in every person, there are many drup therapies used but they are rarely successful with more than a small percentage of patients.

As a person who lived with fibro for 20+ years before diagnosis, I tend to be biased when talking to people with undiagnosed pain. Please ask your doctor to check out the possibility of fibro, or other syndromes in the same spectrum.

Fibromyalgia is typically diagnosed by applying pressure to 18 trigger points. If pain is found at 11 or more of those points then you are considered to have fibro. Ironically, this assessment method was developped for research purposes and not meant to be used clinically but since there are no other clear consistencies within the disorder it has become the clinical standard.

There are many sites discussing fibro (and you are welcome to pm me). Some reputable places to start might be:

National Fibromyalgia Association
Fibromyalgia Network

Check out the descriptions (including the full spectrum of related disorders). If it sounds nothing like your symptoms then move on. If any of it seems familiar then you'll have more information to take with you on your next doctor's visit.

I also had a roommate who was temporarily disabled due to an autoimmune reactive arthritis--doesn't show up in blood test. So, you might want to look at other autoimmune issues (hence the rheumatologist).

 

[OneLittleSpark]

Thank you all so much for your help, support and encouragement. I was having a rough couple of days (coming back to university after a break with my family, and being run down by a cold didn't help) and all of your wonderful comments have helped to put me back on my feet (well, figuratively, at least).

hematite153, thank you for the suggestion and the links, I'll read up on it and talk to my GP when I see her. I'll also talk to her about getting a referral to a pain clinic, as it seems like it might help me.

You've all been so kind, thank you so much guys, I can't put into words how grateful I am .

 

[hematite153]

Thank you all so much for your help, support and encouragement. ...

You've all been so kind, thank you so much guys, I can't put into words how grateful I am .

Anytime! Take care of yourself and keep looking for answers.

If you need someone to talk to we're hear to listen.

 

[OneLittleSpark]

Thank you so much, you don't know how much that means to me .

 

[chip91]

I'm praying for you, my Grama has fibromyalgia, and it's very painful, and she's a very activive 78 year old, so when it brings her down, it brings her down hard, basically it makes all her joints ache and she hardly get out of bed or move around, she typically when feeling well walks 2 miles a day and does a weight training circuit at her Sr. Center 3x a week, when her fibro flares up, she does nothing, and I know she gets very depressed. She's on 5 mg of Prednizone/day to help keep the inflammation at bay.. I hope you can find some comfort and answers VERY soon..

Chip

 

[Pea-n-Me]

I'm not familiar with how the health care system works in the UK. But I know in a general sense that as patients, we often have to do some of the detective work ourselves and then become our own strongest advocate. That may mean pushing for what we want or need. (LOL, I know people in your nation tend to be very polite and don't like to do that; not that we like to either...you know what I mean...)

My gut sense is that treating the pain here is a bandaid solution. First you must know what's causing you pain. Get at the root of the problem. Treat that, and then treat the sequelae. (It also helps to have a name to our problem so we don't think we're crazy.)

There are so many things that could be the problem here - from food allergies to physical and/or emotional diseases - or a combination of all of the above. You need one person who can help you figure it all out. We like to think that person is our GP. But sometimes if they don't find anything and then don't hear from you (or they don't understand the full impact of our symptoms), they assume all is ok and they let it go.

Have you seen an allergist? I know you said you saw a rheumatologist, but there are lots of other rheumatological illnesses besides RA. They can be very tricky sometimes. I don't even know who else to suggest because I don't know you or your history well enough other than what you wrote, but my suggestion would be to "push" your GP more and work as a team with him or her to solve the problem. That's what they're trained to do.

Are you aware there's a doctor from the UK who posts on the Dis? He seems very forthcoming and knowledgeable, maybe if you PM him he could offer some ideas or guidance. I would try to keep the information fairly short and sweet, just a history of the illness - how it began, how long you've had it, what your symptoms are, who you've seen, what's happening now, and what you'd like to happen. I'm trying to remember his name, it's #1MMFan (or something like it - anyone know?) and I think he's got some sports logos in his signature.

I hope you get some answers and feel better soon.

P.S. I'm a big fan of this guy and would love to visit your beautful country someday.

 

[OneLittleSpark]

I'm rather overwhelmed by this outpouring of support and advice, thank you all so much . It really is driving me crazy not even having a name for whatever's going wrong in my body, and not knowing what to do about it, but you guys are all helping me to get through one day at a time.

Pea-n-Me, you're right, just treating the pain and not the cause would only push the problem sideways, but it might tide me over until I do manage to get a diagnosis and a firmer course of action. In the mean time, I've got two MRI scans to look forward to (I don't know how I'm going to stay still so long without twitching ). I might get in touch with #1MMFan, but I feel a little odd PMing my problems to a complete strange (which, I confess, is a little odd seeing as I just posted them up for the whole world to see, but oh well).

I'm planning to make an appointment with my GP as soon as possible, but it's really hard at the moment to just get through the day, especially with my cold and the upcoming coursework deadlines, without having to find the time and energy to get to the doctor too. I know I need to do it, it's just finding the strength.

Again, thank you all so so much, somehow knowing you lovely people are out there, willing me on, just makes it a bit easier to find the strength to get through the day. Thank you

 

[Pea-n-Me]

Just wanted to clarify, I agree it's good to find ways to help manage your discomfort while you explore the problem. Complementary therapies serve a great purpose here.

As far as the Dis poster I mentioned, I've seen him be very open about what he does and make some recommendations to people, so I think he'd be open to offering some guidance to you. But that's JMO. You have to be comfortable with it.

I'm glad you're feeling better posting here.

 

[KPeveler]

hey there - if you need answers or just more hugs, check out www.butyoudontlooksick.com. Its a whole site of people with invisible diseases, and the message boards are wonderful!

 

[OneLittleSpark]

Hi KPeveler and thank you for the link. I've seen the page before, but not found their message boards.

Sorry this isn't longer or more articulate, I've just lost my words at the moment. But thank you guys. Thank you so much.

 

[KPeveler]

the message boards are wonderful... there is even a place for "undiagnosed" where you can ask questions. believe it or not, i first found out about my new diagnosis on a message board (this one!), and researched the disorder, and then found out i had a family history of it, but no one ever knew! sometimes others with your experience may be able to point you in the right direction...

2 months ago i had nothing, now i have a diagnosis, medications, and now 5 *(yes 5!) referrals (rheumy, endo, cardio, podiatry/ortho, and infectious disease). before 2 months ago i had been waiting for over 7 yrs of drs appts to get an answer.

there is hope. people on the boards might have suggestions of what to talk to your dr about, since many of them have similar problems.

hang in there, and my AIM is magicpixiedust1, if you ever need to talk

 

[hematite153]

you're right, just treating the pain and not the cause would only push the problem sideways, but it might tide me over until I do manage to get a diagnosis and a firmer course of action.

Keep in mind there are also pure pain conditions where the pain is the disease/disorder rather than a symptom. I've heard that these can be really hard to diagnose and that you really need an expert in order to figure them out.

 

[OneLittleSpark]

Thanks hematite153, I hadn't thought of that. Thank you K and everyone, for all the help and support. All the suggestions are really helpful too, and I'll talk to my GP about all this when I see her.

Thank you