Discharged from Rhumatologist

[Cal66]

Hi

My sister has Fibromyalgia and keeps getting discharged from Rheumatology I was wondering if anyone else with Fibromyalgia keeps getting discharged from Rhumatologist after 1st appointment?

[Philip]

At most Hospitals, once you are diagnosed with fibromyalgia and they will send a letter to your gp, who will then take over your care and take you off thier patient list because they can’t treat help you or help you anymore unless you get symptoms of another illness.

Philip

I hope this helps.

[Cal66 in reply to Philip]

Hi

Thank you for your quick response. However my sister did have a Rhumatologist, she had Procaine infusions but he retired and another one took over and discharged all Procaine patients, each time she gets re referred she is discharged. She also has Osteoporosis, Osteoarthritis and Rhumatoid Arthrities and has terrible pain walking but she is still getting discharged even though she has had to have her pain medication changed. I don’t understand why they do that to people with Fibro.

[nomoreheels in reply to Cal66]

Hiya Cal66. So do I understand your sister not only has Fibromyalgia but has Rheumatoid, Osteo & Osteoporosis too? If so she should definitely be under the care of a Rheumatologist. Yet you only mention one med, Procain, which is an anaesthetic. That will only give temporary localised relief for Fibro, there are other regularly taken meds which would be more effective on a longer term basis.

Do you know which meds is she prescribed for her RD/RA, OA & Osteoporosis?

There seems to be more going on here with all the other involvement other than Fibro.

[Cal66 in reply to nomoreheels]

She was getting Procaine for a trapped nerve in spine causing referred pain in right side of tummy, Tramadol for pain, Celebrex for inflammation & Amitriptyline to relax muscles to help sleep & inhalers and that’s it.

[nomoreheels in reply to Cal66]

Ok, so no DMARD treatment for her RD, that means it's not being treated so she needs to be under a Rheumatologist, for sure.

I take it the Celebrex was for either her RD or OA? It for as part of RD treatment but not alone. Tramadol for RD or OA pain & amitriptyline as a muscle relaxant/sleep is ok but what about care for her osteoporosis?

She definitely has need to be under a Rheumy. Please do ask her to see her GP to be referred as a matter of urgency.

[Cal66 in reply to nomoreheels]

As my sister can’t take Vitamin D drinks she gets nothing and it’s ignored, so buys Vitamin D3 tablets at Health shop as she has had 2 broken wrists in past, I on other hand are on Vitamin D prescribed by hospital, we get so angry about it & I feel terrible for her, in fact I feel guilty for getting treatment.

Ex Procaine patients feel as if they are a secret to be hidden & that’s why they were discharged, some without even seeing a Rhumatologist.

[nomoreheels in reply to Cal66]

I've never heard the like. Forgive me if I've missed something but why on earth should patients who've been given a nerve block be kept a secret & other Rheumy's discharge them? I've just read she's prescribed gabapentin. That will be for her Fibro I guess, so at least she is receiving treatment for that but the RD & Osteo treatments are still lacking.

What your sister needs is more than Vitamin D3 tablets for her Osteoarthritis. Why is she not offered an alternative because she can't take Vit D drinks, that's just odd. As she's already had fractures she needs a review by DEXA scan & from that see if she needs calcium (or a calcium/VitD supplement) & possibly a bisphosphonate. I have osteopenia/borderline osteoporosis & have DEXA scans biennially & take AdCal-D3 daily. Not only that why wasn't her current bone density state questioned when her wrists fractured? She's had poor medical treatment all round.

Please do encourage her to be referred, preferably to a different hospital than previously. I also think she needs an explanation about this odd thing about being a previous procaine patient. Something just doesn't add up, why is it each time she's re-referred she's discharged if she's been diagnosed with her conditions?

Do you think when she is re-referred next time you could accompany her? I think having some support may be helpful for her to get the treatment she needs, particularly for her RD. She must be in so much pain maybe she won't be thinking as clearly as she would otherwise be & getting across her need with each condition & symptom would be helpful.

[Cal66 in reply to nomoreheels]

She is in a lot of pain, sometimes she can’t hardly move. She has 2 or 3 Dexa scans & was diagnosed with Osteoporosis 17 years ago by our previous but now retired Rhumatologist when she was 1st referred to him for a Lupus test, fortunately up to now she is clear., shortly after that all her other symptoms & medical conditions started.

Our GP’s are frustrated but can only do so much, my mum is thinking of paying private for her, but that doesn’t always work out good as I have found out, my mum always goes with her & has told the doctors but she is just ignored as well and now she’s lost her motability car. On top of everything else.

[nomoreheels in reply to Cal66]

I'm sorry but if her GP's are saying they can only do so much then they're not being honest, neither can they ignore her gmc-uk.org/guidance/ethical...

[Mandy8175 in reply to Cal66]

A lot of rheumatologist think fibromyalgia is a "junk diagnosis" used when doctors are too lazy or dumb to find a real diagnosis! Here in the U.S. it is hard to find rheumatologist that will treat it with any seriousness, most try the big money meds like lyrica then dump you if you can't tolerate!

[Cal66 in reply to Mandy8175]

That is terrible, thank goodness we live in England sorry Uk however I think it is partly ignored here from what I have been reading today, I also have Fibro, but I have SLE and more but I am lucky compared to the many.

[Ouchyjenna]

In Wales fibro is managed by the pain clinic and R A and osteoporosis is managed by the rheumy. If she has R A that has to be monitored.

[ITYFIALMCTT]

Has your sister asked her GP for a referral to one of the specialist fibromyalgia courses to guide her in managing the condition? There are NHS ones with an excellent reputation in London and The Walton.

[Cal66 in reply to ITYFIALMCTT]

Hi

We have never heard of these clinics, so guess that we don’t have any in the NE. However I would be surprised if they can change medications.

Our GP’s want her treated & monitored by the hospital, they are annoyed that she is being discharged as it puts them back in the same position of not being able to help her and it is all going around in round about & back to square one. She did go to the Pain Clinic before, but because she couldn’t take Oramorph all the time as she drives & has a little boy they discharged her. We are just so frustrated with it all & fed up & yet I have the same Consultant for my SLE & he is totally different with me.

[ITYFIALMCTT in reply to Cal66]

I don't know if this clinic is still operating in Newcastle but does the fibromyalgia support group for the NE have any advice about referral to a residential course if there isn't one local to your sister? I know a number of people whose GPs funded a residential course in London/The Walton etc.

dailymail.co.uk/health/arti...

newcastlefibromyalgia.co.uk - might know a support group nearer to your sister who can advise her about a course/clinic that might help?

ETA: it's odd why the consultant is so different with you - especially as your sister has RA etc. in combination with the fibromyalgia.

[Cal66 in reply to ITYFIALMCTT]

I know because our last Consultant was also checking her annually for SLE, but this one discharged all patients who had been receiving Procaine infusions, as they said resarch hadn’t been carried out & no papers had been written & so they were all discharged.

My sister couldn’t do a residential course of any kind as my nephew has ADHD and she has to take him to school and back & now to top it all her motability car has just been taken off her as she only scored 10 points on PIP, it’s just getting too much for her to cope with.

[Philip in reply to ITYFIALMCTT]

The Centre in London is excellent but they can’t cure you, but being helped to cope with it and how to pain, as in PSYCAL OR PSYCOLODGICAL, it’s a private clinic I believe,.

[ITYFIALMCTT in reply to Philip]

Guy's or UCLH (the one in Queen's Square) have excellent reputations and they're NHS fibromyalgia clinics.

[helixhelix]

But if she also has rheumatoid arthritis isn't she being treated for that? So her rheumy could look at both together.

[Cal66 in reply to helixhelix]

Hi

You would think so, but has only been getting Tramadol, Amitriptyline, Celebrex + inhalers for Asthma. Our locum GP changed her to Naproxen & Omeprazole but she had side effects with both & that was when she was rereferred back to Rhumatology as they did’t know what else to give her. Now Rhumatology has put her on Gabapentan & GP has to monitor her.

[Xxelliexx]

I have both and my rheumatologist medicates for some and go for others.