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See Consultant tomorrow

22 posts in this topic

Well I see my Rheumatologist tomorrow and will see if he'll support an application for Ill Health Retirement.

Some of you may remember that I was taken to a tough Capability Hearing, dismissed & then an appeal which was upheld. This has given me a little more time to see if IHR is possible, my own general practitioner is fully supportive and the OH doctor said he would support it as well. But I need more info from the consultant and that is what is making me so anxious because I do not find him easy to talk to and so far he has not been much help to me.

So feeling the stress and this is making me more tired and has upped my joint pains.

 

I also need to mention the ongoing fatigue and swelling of my hands and how the Raynaud's is now affecting my toes which often look deep purple and the skin looks pitted. I take Amlodipine for my Raynaud's but it's not really helping but don't know what else he could try. I will also need to ask about results of an MRI scan and nerve conduction tests I had done in January.

 

I keep trying to stay positive but finding it so hard since the battle with work and knowing that that is still not fully sorted.

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It's a shame that those who truly need these funds and services have to put themselves through so my anguish and pain to get the services due them. I wish you luck today with your rheumatologist, but maybe it's time to go into these situations with the mind set that you DESERVE the disability services and speak with authority and knowledge in that YOU KNOW you DESERVE the disability. People tend to walk over the meek in an effort to move on to the next.

 

Good luck and hang tough, the answer will always be no unless we continue to ask, ask and ask.

 

Linda


Tru

 

It is what it is...........

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Jensue, I don't know what dosage you are taking in the Amlodipine but, maybe you can have it increased to a higher dosage. It doesn't hurt to ask. Of all the medications I have ever taken that one has been a life saver for me. I am finally warm after all those years of always being cold. I am no longer cold inside my body or on the outside. I haven't had a Raynaud's attack in almost 2 years. Maybe a higher dosage will do the trick. If not there are many medications out there that will help you.

I hope your health retirement package goes through. You are in my thoughts.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Sheryl I have tried nifedipine but that didn't help apart from giving me hot flushes and I've also had an Iloprost infusion which also did't help. My Raynaud's has been getting so much worse over the last few years and this last winter has been awful. I feel as if I want to just hibernate for 3/4 of the year or move to much warmer climate but thats not possible at moment and would mean moving abroad.

 

I have just done a small shop and even though everyone else is in summer clothes there's me all wrapped up & wearing gloves just to keep warm.

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Jensue, I also took Nifedipine. That was like taking nothing. The only thing that may work better for you is the Viagra. That also helps with many other issues that could crop up, but won't with the medication.

If you increased your Norvasc to 10mg if you aren't already taking that amount it may help. I'm not a doctor but I had to have mine increased and all is well for the moment. My next step will be Viagra if it ever becomes necessary. I hope you find some relief.

Never go without socks and or slippers in your home that helps a bunch. I have wool lined and flannel lined house shoes. If I don't have on street shoes I am wearing one of many pairs of house shoes. I keep them in my car for when I am elsewhere visiting. Keep your feet and toes warm at all times. One may think wearing socks are enough. Well, your toes and bottoms of your feet get cold walking around on ceramic floors or even tiled floors. We need to preserve our body parts as best we can. Let me know if you increase your meds and how much difference it makes. Best of wishes to you.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hi Jensue, hope your rheumatologist is supportive tomorrow- he may suprise you!

Re the Raynauds. I have been taking nicardipine and having Iloporst for the last 18 months, but it was still pretty much out of control. When I was last in hospital in March they decided to add Losartan (an ARB) as well in an attempt to improve things. I have found a big difference, to the extent that I have stopped taking the lNicardipine (haven't told the rheumatologist yet!) and still seems better. I know it is suddenly warmer weather as well, so is a bit hard to tell the true extent of the Losartan effect- but usually even in hot weather I have cold blue fingertips. and purple feet (no sandals for me). The doctors did mention trying viagra if all else fails , but it is very difficult to get it approved, and I would not be keen to take it either due to potential side effects. It might be worth your while asking your rheumatologist re the Losartan - you can tell him you know someone else with severe Raynauds who has had good results. Another plus is that I have never had any side effets with the Losartan (unlike Nifedipine headache!) so highly recommend it.

Lizzie

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Sheryl I know what you mean about wearing slippers / house shoes, I never walk around without something on my feet. One thing I have found to be really good are proper sheepskin boots because these not only help to keep my feet warm but also my lower legs which are often icy cold. I would certainly suggest anyone with Raynaud's to try them.

 

Lizzie I will mention the Losartan and see what he says of course that is if he listens to me!

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good luck jensue,i will see my doctor the 28th.my fingers and toes are often white,purple.i know I need something to control that as well.im so glad to read and see that other people give such great advice...hope you all the luck linda lou...

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I have been wearing sheepskin boots all winter and sheepskin slippers around the house. I had to go out the other day, though, and it was too warm to wear the boots. As a result, I ended up with a couple of sore spots as my feet had grown unused to my regular shoes. I need some sheepskin sandals. :lol:


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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I have just returned from my appointment and to be honest I don't know what to think!

 

I told him everything and he sent me for another load of blood tests and did a Lupus test amongst others another one was to check the clotting in my blood because of the results of MRI scan on my head I had in January. He showed me the areas that where showing as being abnormal but also said these may be due to age! Cheek of it! I'm not that old!!! Oh and I do still have a brain!

I said that I didn't feel as if I was getting anywhere and he replied that if I wasn't happy he would write to my general practitioner & could be referred to some one else but pointed out that with SSc you can only treat the symptoms as they arise. So I'm not sure what to do but will talk to hubby tonight about it.

As far as IHR is concerned I asked him outright if he would support me but he said all he can do is write a report for OH doctor to decide if there is sufficient information for IHR. So I don't feel I know one way or the other, I did ask for a copy of the report which he said would be done on Thursday this week.

He also suggested that I increase dosage of Amlodipine so that I take it morning & night but to do this at the end of the summer because of the warmer weather we seem to be now having.

I have also got results of the nerve conduction tests which have shown I have carpal tunnel syndrome in both hands. I do get a lot of numbness & tingling which does disturb me at night. He thinks it's due to swelling at my wrists. He is going to refer me to a surgeon but not sure I want an operation. Has anyone else had this & had hands operated on? My thinking is that if it's due to swelling will that go down? I've now had it for about a year with it gradually getting worse.

 

I feel that I am in limbo land and not sure what is the best way forward. Any ideas / suggestions would be welcome.

 

Jensue

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Jensue:

 

The doctor will no doubt be sending copies of your medical records to IHR upon their request. He doesn't have to back you up; it's all there in black and white. All your tests, results, opinions, etc. are written in your records. That is what IHR will examine. I think it's time to relax for what you post, all that information will be in your records for IHR review.

 

Linda


Tru

 

It is what it is...........

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IHR is ill-health retirement, Tru. Jensue has already been approved for Incapacity Benefit which is the UK equivalent to US Disability. IHR would come from her employers and is part of her employment benefit if and when she meets the criteria. Whether it is approved will depend on what is advised by an Occupational Health Advisor, an independent resource which is contracted to advise the employer. Just being approved for Incapacity Benefit does not guarantee that IHR will be awarded. I went through a similar process and no matter how much the doctors said, they agency would never recommend the ill-health retirement for me. The only thing they could do was keep me on the books as unpaid until I reached normal retirement age, so I could collect my work pension when it came time.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Jensue, It sounds like you didn't really get any answers to your questions, and even ended up with a few more! It's a hard decison to make re deciding to be referred to someone else. Could get someone better or could get someone worse!

Lizzie

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Jensue,

Regarding the carpal tunnel. I had that a few years ago in my right wrist. I had worn the wrist brace at night for over a year with no good results. I finally decided to have the surgery and I have to say it was the best decision I could have made. I've had absolutely no more trouble with my wrist and recovery from surgery was pretty quick.

Good luck on what you decide.

 

Sherion

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Hello Jensue, I am glad your doctor said you could increase your Norvasc in the fall. It might really help you with some of your symptoms.

Carpal tunnel syndrome can be pretty rough. I had severe bi-lateral carpal tunnel. I couldn't function. The pain never went away and the numbness was to the point that I couldn't feel when I was holding or grasping on to something. I also wore the braces which kept my hands in a very uncomfortable position. I was still in pain. So after 3 months I had surgery on the left hand. I watched the entire proceedure. When my hand was recovering the next several weeks the right hand also started feeling better. By untrapping the tendons in my left hand it released the pressure going up my arm and around to the other side. So I never have had any surgery on my right hand. I am right handed so I am glad I chose the surgery for the other hand first. The proceedure is quite simple. I won't go into details unless you need me to private message you. When your pain can't be eased you will make the decision. Nothing was easing my pain and numbness or tingling.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hi Jensue,

 

I hope this whole ordeal can be over and to your advantage.... soon! I know how much this alll adds to your stress and that, in turn exacerbates the raynauds. Stress is really horrible for our illnesses :(

 

I had carpal tunnel surgery done on each of my wrists and the second I felt the release during the surgery, the pain was over instantly! My carpal tunnel came on over a period of only a month, which made me think it might be something else because I had always heard it happened over a slower period of time. However, when the neurologist did the nerve conduction test, he couldn't believe it was, in fact, at its most advanced stage! Go figure!

Although it has returned (the carpal tunnel), the pain isn't the issue it was the first go-round. Also, the sclero induced the Carpal tunnel!

 

I wish you nothing but the best with all you are going through. Hope it' s soon so that you can de-stress.

 

Hugs,

Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Sheryl I find it is my right hand that is the worst is I suppose if I do decide to have it done it will be that one first. The swelling on my hands seems to go up and down at the moment but whenever they swell up more it kicks off the tingling pain & numbness even more, I have also noticed that my thumbs seem weaker so wondered if that was linked to it.

I will give the extra Amlodipine a try in September to see if it will help improve my Raynaud's.

Susie you are so right about the stress exacerbating the Raynaud's, but I also find it affects my stomach issues as well.

 

I am just hoping that the consultants report contain enough so that the OH doctor will be prepared to support the application of IHR. My general practitioner has already given him a report which is fully supportive so it's wait and see time.

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Jensue, you mentioned your thumb also hurting. The puffy padding at the base of your thumb can also be affected. If your thumb starts having much pain all the time. Pain that really doesn't go away I would seriously think strongly on surgery. The muscle or sturcture in the pading of the palm below the thumb can go entirely flat. Once that happens, for any length of time it will never go back to normal again. You entire palm will be flat. Not to scare you but watch where and how much that thumb bothers you. My girlfriend has one flat palm and one regular palm. It looks quite strange. Plus, she has no strength in that hand, even after surgery. Our hands are important take care of them. You may find you have better circulation and don't have any new raynalds attacks. I just thought about it. I haven't had any since my surgery. I just assumed it was from the Norvasc. Never entered my mind that the surgery may have helped that also.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Sheryl I've just had a look at my palms just below my thumbs and they do look much flatter than they used to. I find opening jars etc very difficult and also doing things like peeling the vegetables because holding them firmly enough is an issue.

 

I suppose if the nerves are getting trapped then some of the blood vessels may also be getting trapped.

 

Jensue

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