UCTD or Fibromyalgia?

[Pennypug]

Sorry for the long post, For the last 3 yrs I have struggled with flares of intense pain and fatigue. The last started in Oct 2013, Dr referred to rheumy who I saw in April 2014 who diagnosed UCTD due to inflamed joints, intense fatigue and numerous ulcers in mouth, nose, hair, hands and feet. The pain was mainly in my hands, feet and hips, a burning, knawing joint pain with swollen joints. I was started on Hydroxychloroquine and prednisolone. Within 48 hrs of the prednisolone I could walk again and skin and joints improved dramatically. As I reduced the prednisolone dosage the symptoms returned gradually. I was then started on azathioprine which gave little help and was stopped 3 months later. At this same appt the rheumy decided I was also suffering from fibro due to the pain on tender points, although at that point everywhere was painful. Prednisolone was stopped and amitriptyline started. joints swelled and due to reaction from amitrptyline this was changed to gabapentin. The joints and skin ulcers have increased again over time, the gabapentin is being increased each time and feel little relief from pain, just feel drowsy. Each time I have a short course of prednisolone the pain disappears and the skin sores/ulcers go. The rheumy has said this is coincidental and to continue with gabapentin and painkillers whilst waiting for the pain clinic appt to come through. I'm deteriorating and struggling to deal with the daily pain again. I was taking the maximum daily dose of tramadol which initially helped but no longer is and have moved back to co-codamol which at maximum dose takes the edge off but mornings and evenings are unbearable. I dont know what to do, the GP can only do what the rheumy advises, although the gp keeps writing to the rheumy with the problems, the rheumy will not see me to look at the sores/ulcers and joint swellings and says all of the symptoms are fibromyalgia. Yet still wants me to continue with the hydroxychloroquine for the UCTD. I'm at my wits end and struggling day to day. I dont know what to do from here.

[mattoid-mags]

Hi pennypug, you have been having a very bad time of it... I genuinely feel for you. Perhaps your doctor could refer you to another rheumy as it seems that you both are not happy with the current one. Sorry I can't give you anyany more positive advise. Take care, soft hugs, Mags x

[Crazy_Horse]

Hi Pennypug,

Chronic pain poses such a tremendous challenge.

I hope your pain clinic appointment comes through soon!

From reading your post, it sounds like your Rheumatologists has diagnosed you with both FM and UCTD?

Some of the frustration may be in the amount of time which has passed. It takes several months to see the effects of hydroxychloroquine. I am sure your Rheumatologist was waiting to see the full effects of this medication.

The prednisolone would give rather immediate and effective relief. It feels like a wonder drug. However, many doctors will not keep patients on this med indefinitely, as there are too many potentially serious health issues with long-term use.

I understand you are saying some symptoms go away with the prednisolone and return when the prednisolone is stopped and you wonder if these symptoms (ie: mouth ulcers, joints swelling) are being attributed to "fibromyalgia?"

It's possible your Rheumatologist is still hoping the hydroxchloroquine will help you more, given even more time. Many Rheumatologists rely heavily upon this med and give it ample time to work, as they consider it one of the safest meds they can offer. While it's frustrating on your end, I think he is trying to be careful to help without doing more harm.

Sounds like the gabapentin is not helping enough with pain and is making you too tired?

It would be helpful if there was more specific clarification for you, as to what the Rheumatologist is thinking. Any chance of your seeing the Rheumatologist directly for a follow-up?

Is it possible for your GP to help you more with pain while you await a pain clinic consult?

If your GP needs the Rheumatologists approval to change pain meds, or to help you with pain, it makes sense the GP directly let the Rheumy know you need immediate assistance and/or also makes sense for you to see the Rheumatologist for a follow-up on a treatment plan that is not working for you.

Is it possible to see the Rheumatologist to discuss your current treatment plan?

I hope you find more answers and more comfort soon!

Crazy_Horse

[Pennypug in reply to Crazy_Horse]

Thank you for your quick response crazy_horse. My initial diagnosis from the rheumatologist was UCTD, then 6 months later added fibromyalgia. My next appt for rheumatologist was 6 months which will be 1st May.

I have been to the GP numerous times, resulting in the GP writing for an urgent appt with rheumatologist on 3 occasions now detailing the problems. The rheumatologist has written back 3 times saying it is fibromyalgia problems and nothing more he can do, the pain clinic is only option. Yet the rheumatologist still wants to see me 1st May regarding UCTD.

The GP is helping as much as possible with paid meds, and wanted to start the steroids again, having exhausted the amitryptaline I am now on gabapentin. I started at 1 a day , then 100mg 3 x a day now on 200mg 3 x a day. I am very drowsy in the mornings and feel spaced out during the day, however the pain remains as before and is increasing. The skin ulcers, sores and joint swelling increase also.

The only other pain medication from the GP has been tramadol or co-codamol, and I continue to take 8 co-codamol per day rather than the tramadol which became ineffective.

I feel the gabapentin treatment isn't working but have hit a brick wall as this is all I have to work with. I have chased the referral to the pain clinic and yet to hear back.

[Crazy_Horse in reply to Pennypug]

Your immediate issue is pain management, as I understand your posts.

Even with a referral to a new Rheumatologist, it will likely take some time to get in and you need help with pain now.

Does your GP feel you have other options?

Can your GP offer you additional pain med/management assistance?

There are many other approaches to pain management which may not require a specialized pain clinic.

It doesn't make sense for these physicians to "pass the buck."

You need help with pain and a doctor should be able to help you, if willing to do so.

We all need to be sure we understand each of our physician's personal policies on treating pain. Is it possible for your GP to change your pain med approach? Is your GP willing to assist you with your comfort and your quality of life? I hope so!

If your GP cannot assist you, this leaves you in quite a bind, doesn't it?

I hope you will obtain cooperation in pain management, right away.

You are in a tough situation. Generally, specialists see diagnosed patients once every 4-6 months, sometimes annually. GPs tend to see patients more frequently and are often considered the "health care case manager." I truly hope your GP can and will help you out of this bind.

Please let us know how you are getting on?

In Support,

Crazy_Horse

[Crazy_Horse in reply to Crazy_Horse]

I had re-read your entries here, hoping to help somehow. You are in quite a bind. Both FM and UCTD can be very painful conditions. You deserve some much-needed relief.

You had mentioned your GP had wanted to start the prednisolone again.

Many doctors hold off on this, only taking this measure when it proves absolutely necessary. They will often wait in non-life-threatening situations, even when the condition is very painful. They are trying to keep the patient from becoming steroid-dependent. It may seem cruel they withhold the prednisolone or other steroidal med; however, too many people end up dependent upon the steroidal med because frequent/chronic use shuts down/limits the functioning of their adrenal glands. It can be very difficult and/or impossible to get the adrenal glands functioning back to any "normal" level of functioning, after chronic steroid use.

Sometimes, a "pulse" of short-term steroidal medication is helpful, however.

The potential benefits vs. potential health risks are something the doctor should make very clear to the patient. Sometimes, this type of intervention is very helpful.

When steroidal interventions are used often and when not absolutely necessary, it's definitely not helpful for the adrenal glands to wither away from disuse. The steroidal meds give the signal the adrenals can sleep/rest, their daily steroidal production is not needed. The adrenals can eventually atrophy and may no longer provide the "normal" daily amount of steroids our bodies need.

If this happens, the patient becomes dependent upon steroidal supplementation for a lifetime. There are often additional complications.

I hope you will find adequate help. Soon.

Crazy_Horse

[fibromite35]

As an American, I hear things in the news all the time about how broken our health care system is. But I'm reading things on this site that I have never seen in american health care, and it makes me think our system isn't so bad. I can't imagine my dr's shuffling me around like that. How frustrating that must be for you! I've had FB for 35 years now, and I've never even seen a rhuemy. My primary care dr's have always treated me with pretty good success until recently. Age and menopause ya know? I really hope things get better for you. I can feel your pain all the way across the pond.

[Chad_R]

I also feel your pain. I hope your GP will help you out further.

[TheAuthor]

Hi Pennypug

I am so very sorry to read of all of your suffering and your struggle, and I sincerely hope that you can find some resolution and relief to these issues. Apart from Fibro, I also suffer with Chronic Asthma, COPD and a Fixed Airway, which means I take a 10mg dose of Prednisolone daily. So, I am coming from my own personal perspective on this, and that is, that Prednisolone has never, ever, reduced my Fibro pain.

Therefore, if Prednisolone has decreased your Fibro pain then it was probably not Fibro to start with? But that is simply my opinion (and not as a FibroAction Admin). Also, Fibro is not an inflammatory condition therefore Fibro does not give you bodily swellings, so again, if you had swelling on your body they would not have been Fibro related.

I want to genuinely wish you all the best of luck and I hope that you can find the answers that you so desperately desire and deserve. There are times when we must make a stand, and I would think that you have reached this stage. Discuss the situation with your GP and let him know that you are not satisfied and that you are changing to a different surgery if you are not assessed properly (by somebody else), and stick to your guns!

All my hopes and dreams for you

Ken.

[Mdaisy]

Hello Pennypug,

Getting a diagnosis can be such a distressing lengthy process & we understand as we have all been there. I can remember only too well how I felt & want you to know we are here if you need us to listen.

Ken has mentioned about the swelling etc which doesn't seem to fit with Fibro. It could however be the case that you may have secondary Fibro due to this undiagnosed condition causing the swelling. If only you could get a diagnosis & adequate treatment for this, I think I can only suggest a second opinion maybe which is the route I had to take. But it is frustrating as the new Consultant invariably asks to start at the beginning again, going over all tests & examinations you've already had once again. I did however get the diagnosis of Fibro in the end. Here's some info about second opinions ;

nhs.uk/chq/Pages/910.aspx?C...

I also would like to provide you with this information on our website from our Expert Patient range about Knowing your Diagnosis, as this may be helpful to you. Link below;

fibroaction-public.sharepoi...

I do hope you get the answers & treatment you deserve soon

All the best

Emma

FibroAction Administrator

[Katt]

Really sorry to hear that you are suffering and in limbo land as I call it.

You have had lots of good advice. All I can add is that even with a referral to the pain management clinic you still need your rheumatologist and GP to support you with pain meds. I got my hopes up about being referred to a pain clinic and although I found the pain management programme that they put me on very useful for accepting and finding alternatives to managing my pain e.g. Relaxation techniques and gentle exercise routines etc. I am still backwards and forwards to the GP for the pain medication and my GP is still the crucial person to support me with that with advice from the rheumatologist.

Hope things improve for you soon xx

[marmaris]

Hello everyone I have read all the posts above and feel true compassion for pennypug. I am awaiting a Rheumo appointment but have all the Fibro symptoms and getting worse. Could I ask what UCTD is please? Pain changes your life and we all deserve to get some relief from that. Was interested to read about the steroids and the effects on the Adrenals? I have been having these for root nerve treatments for cervical spondylosis and osterarthritis in the left foot. Have often wondered about steroid treatment. It is only temporary relief, and I am disappointed with that. Hope you find a solution and help soon....

[Pennypug]

Thank you for all your help, it's great to know there is help and support out there.i guess for me the problem is trying to distinguish the uctd from the fibro to get the best pain relief.