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#1 danielle

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Posted 22 April 2010 - 12:45 PM

I'm looking for some help.

My partner was diagnosed 10 month ago but due to many hospital mix ups we have only just seen the specialists. He is on very strong pain medications. His legs are extremely swollen and he has lots of head pain, has anyone got any ideas that could help us with pain relief?

#2 Shelley Ensz

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Posted 22 April 2010 - 01:32 PM

Hi Danielle,

I'm sorry your partner has scleroderma and send my best wishes to both of you.

As it happens, it's not customary for scleroderma to cause pain so severe that it doesn't respond to strong pain medications. It sounds like part of the problem might be his fluid retention which could be causing the extremely swollen legs and perhaps the head pain as well. Hopefully his doctors have done something to reduce the swelling and that should help substantially with the pain.

Please make sure that he is seeing a scleroderma expert, for the best possible treatment!
Warm Hugs,

Shelley Ensz
Founder and President
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The most important thing in the world to know about scleroderma is sclero.org.

#3 Jeannie McClelland

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Posted 22 April 2010 - 01:50 PM

Hi Danielle,

I'm very sorry your partner has scleroderma and is in so much pain. It's difficult seeing someone you love having health problems. I hope he finds some relief soon. Don't be afraid to be a bit pushy with the doctors about the swelling in his legs and the head pain.

Welcome to the Forum and please let us know how you both are doing.

Best wishes,
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#4 Sweet

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Posted 23 April 2010 - 02:49 AM

Hi Danielle,

Welcome to the Sclero Forums. I'm sorry to hear about your partner's diagnosis. Shelley gave you sage advice, and I can only agree with her comment. It sounds like he needs further diagnostic treatment to get to the bottom of the severe pain he is having.

Keep us posted, and again welcome! :flowers:
Warm and gentle hugs,

Pamela
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#5 danielle

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Posted 24 April 2010 - 11:53 AM

hi, thanks for your response,

We have seen specialists at the Royal Free in London and they seemed baffled by the swellings he displayed. He has been hospitalised with this and chest problems many times in the last year. We still have another 7 weeks before we go back to see if the methotrexate is working as he has been taken off Cellcept. He is still on 35 ml of steroids, they have just reduced it from 40, and it has been at that level for over 12 months.

As for pain relief he already takes a strong opiate twice daily plus we have another one for break-through pain which is currently being used quite heavily. My concerns are surely on this level of medication his pain should subside but it just seems to get progressively worse and even when he has a 'good' day, (I haven't seen one now for at least 10 months which is becoming very disheartening) he still has to use the extra medication. Is there anything I can do to make this better as we seem to be banging our heads on the wall, and it is now very frustrating.

I don't want miracles just the pain and swellings to be lessened so my partner has a better quality of life, as he is no longer able to walk very far and very rarely is able to do more than shuffle round our flat. Considering he was a fit healthy man a year and a half ago and woke up one day and this all appeared with only elbow pain as a symptom in the weeks running up to that day, for his own sanity I need to find answers and would be grateful for anyone who could give us some tips x

#6 Eos

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Posted 24 April 2010 - 03:37 PM

Pain and swelling in the feet. Has he been tested for amyloidosis? Just an idea, as a friend had similiar symptoms and that was her diagnosis.
Also I read somewhere about (trigeminal) neuralgia being linked to scleroderma in rare cases causing a lot of pain. I may be wrong....

I hope your partner will feel better soon. You may want to find a scleroderma specialist to get a second opinion on this situation. Nobody should have to endure pain all the time!

#7 debonair susie

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Posted 25 April 2010 - 06:19 PM

Hi Danielle,

I am also very sorry to read of your partner's leg swelling and pain. How difficult this has to be for you both.

Just as those before me, I hope you are successful in finding the answers you obviously so desperately need.
Special Hugs,

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#8 Shelley Ensz

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Posted 03 May 2010 - 06:42 AM

Hi Danielle,

I'm just checking in to see if your partner's condition has improved any in the last week or so?

I am thinking of both of you and sending extra warm hugs your way. :emoticon-hug:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#9 danielle

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Posted 04 May 2010 - 01:15 PM

Hi Shelley,

Thanks for the post, it's so nice to see people take notice. This site has really opened up a release for us.

Steve has been put on water tablets in last week which helps mildly with the swelling (at least you can make out a foot, ankle and leg). The methotrexate has gone up today. The pain has been pretty bad the last few days. On a bright note we had 5 days of Steve feeling nearly 'normal' (still with leg pain) but it was the first time he has sat in our pub for over a year. It's a real boost to see he can have good days as we haven't had that in over a year, so although he's more frustrated at relapsing, I'm pleased we had some quality time and laughs :-). Beginning to wonder what my next move will be as received appointment from Royal Free, 29th July, and he spent a week with them middle of March, and feel that this is far to long a wait in his current position. I understand that there is limited specialists and I am the 'neurotic' girlfriend, but this waiting game we've played for far to long and I can't help thinking that if we had been seen sooner and we wouldn't have spent time in hospitals that couldn't cope or knew nothing about the condition and he wouldn't have developed to this level. Maybe I'm wrong and now we're going back round this hamster wheel again, is this normal process?

Thanks for listening, it's hard to explain to people when then don't understand and finding answers is difficult.

xx

#10 Shelley Ensz

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Posted 06 May 2010 - 12:07 PM

Hi Danielle,

I'm glad you have both been able to enjoy a few of his 'good days'. My husband and I finally gave up looking for good days many years ago, and began focusing on seeing how many good moments we could acquire each day.

During the 90's, I was bedridden for most of a year. By focusing just on "moments" we actually created many wonderful memories during that time (and ever since). My husband would bring me breakfast in bed -- and we'd eat by candlelight. If I could tolerate it (I had a lot of migraines that year), he'd put on some light symphony music. He would often read me books or play a board game.

I'd do whatever I could during the day, and even dawdled a list of 100 things I could do in bed, that I could pick from given whatever level of energy I had that moment. Such as, file my nails, send a thank you card, put on lipstick. In the evenings, my husband would toss me in a wheelchair and take me for a spin through the mall. He'd get his exercise that way, and I'd get some fresh air.

To socialize, I'd invite friends over for lunch with a plan A, plan B, plan C and plan D. If I felt exceptionally well, we'd go to a quiet restaurant. If less well but still kicking, I'd fix lunch for them at my place. If I was worse than that, I'd order carryout and have them pick it up, and we'd eat in the kitchen. And if worse came to worse, which it often did, they would arrange lunch, bring it over, and eat by my bedside. Everyone was satisfied with the plans and the lunches kept me in the loop of life "outside". And, of course, there was always plan E, which was to reschedule the lunch. Perfectly healthy people reschedule things all the time, so I tried not to fret over whether things had to be rescheduled.

As you can see, it was impossible to arrange an entire "good day". That just didn't happen then. But, I could string together little tiny pearls of joy and happiness, special moments shared with loved ones, which I could cherish as I was recuperating.

Since your partner is so ill now, I'm thinking that by mining and rejoicing in the tiniest pearls of moments might help you each further enhance this special time together...rather than putting your life on hold, waiting for those awesome 'good days' which can be so few and far between, sometimes!
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#11 Lynnie

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Posted 07 May 2010 - 10:47 AM

Hi to you both and every good wish,

Shelley is so right about that!!! Shelley what you wrote was beautiful and made me smile and sigh and fill up a little. It's so important that you both share.... The love and strength you have and make each new day,whatever that day brings, special. Keep love and hope. That is what keeps us all who suffer...sane! Bless you both Lynn x :emoticon-hug:

#12 Amanda Thorpe

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Posted 09 May 2010 - 05:16 AM

Hello Danielle

Welcome to the forums and sorry my welcome is late.

I have had diffuse scleroderma for 3 years, my husband is my carer and my mother helps with housework. During my first year I did no more than sit on the couch in my dressing gown.

Shelley's idea to look for good moments rather than good days may be a more realistic goal, certainly a less disappointing one. Yesterday I spoke to a friend with scleroderma and we both agreed that doing one thing a day was our aim. That one thing could be as adventurous as making dinner or as small as getting dressed, anything on top of that is a bonus. :emoticons-yes:

The Royal Free is a centre of excellence for scleroderma, I am a patient there myself, although the time between each appointment may seem a long wait you can be assured that your partner is under the care of experts. You could try phoning to see if there have been any cancellations and if an earlier appointment is now available.

Remember it takes time to adjust to scleroderma and the changes it brings with it for both of you but it can get better. My life is completely different to what it was and so is my husband's but that doesn't mean life is bad just different. :VeryHappy:
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#13 Peggy

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Posted 11 May 2010 - 04:13 PM

You know it was meant to be that I just decided to check in and see the posts. I haven't been online much due to just not being able to do much. So I come across this post that talks about the "good days". I have spent the last 2 days sick. Monday was a day in bed and today I ventured out to the couch for a change of view. But when you talk about being able to maybe do 1 thing a day and feeling good about that so rings true for me right now! This is coming from someone who was such an energizer bunny who was go, go, go. Now I'm lucky if I can keep up with the laundry and heaven forbid if I can keep up with the ironing. Never mind the other things that linger out there that aren't getting done and it's driving me nuts. But the pain that I have is so terrible that it just hurts to move; I could sleep all day and still not feel rested; I can't eat as I don't have an appetitie, plus it gets stuck in my chest so why bother. Since January from one test to another things are going downhill and thank heavens my apt is next week with my rheumatologist. I haven't been doing the methotrexate treatments as it just became an issue for me of "qualifty of life" as I was sick 6 of the 7 days in the week and only had one good day which was the day befor my treatment. So I know he'll want it started up again. I am also hoping for the possibility of a pain pump. The pain management doctor wanted to do a spinal block but that treatment seemed no different than the TENS unit and that didn't work so I decided against this method of treatment.

So I want to thank all of you for somewhat validating how I feel. To know that there are others of you who feel this way and are hoping for the ability of doing "1" thing a day leaves me feeling somewhat better. Now to remove the guilt that comes with that and how horrible this is for my poor husband. This disease can sure do alot to a person.

Warm hugs,
Peggy