throat collapsing, veins hurt!
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June 22, 2012 at 3:27 am
SO things have been a little crazy!! I have been working too much, since we have had some people out of country the past two weeks and am wiped out!! I switched to gammunex the last two infusions in hopes of being able to increase the rate and not itching as much… however it seems the last 2 infusions havne’t worked as well, i’m not sure if this is coiencidence or not!? I am not sure why one brand would work better than the other!?, or if i’ts just that I haven’t had much time to rest..
My hands have been doing really well.. however the back of my throat feels like it is collapsing.. and I am SCARED.. i have been a wreck! .. when I talk it is like the back of my throat collapses on itself (I dont’ snore and never have, but it feels like what a person who snores would feel).. if I lie down on my back it resolves.. It isn’t there AT ALL in the morning, but as the day progresses it worsens.. until I rest.. even thirty minutes and I am better.. swallowing feels very very odd (as it did before I got my first dose of IVIG). fyi- my soft palate elevates just fine (symmetrically and very high), so it’s not that..
My buttocks and shoulders are also weaker..(all my proximal muscles are weakening, distal ones are ok) I am finding climbing stairs and inclines VERY difficult this past two weeks..one more strange thing – I feel like my veins are inflammed after IVIG (anyone else feel this).. they literally hurt proximal to the infusion and elsewhere too, but not as much.. I had a CTAngio chest this week.. (i have had iv contrast before without any problem), but it felt like FIIIIIIRE in my vein.. they just feel raw on the inside! anyone ever feel this way? I feel like they must be getting damanged by this all.. I am so worn down mentally and physically, and when my syptoms flare i still fear far worse things than CIDP!
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June 22, 2012 at 2:58 pm
Hello dear,
Just an attempt to calm you. I think you have a relaps, after doing a little bit too much. I received my second IVIG infuse this morning and the nurse told me that many patients complain about a burning feeling in their vains. I don’t have this sensation, but it is common and it disappears after a while.
A suggestion, hoping you will not feel offended. I have read you posts, and I am under the impression that you still have not accepted your disease. It looks to me that you are still fighting your disease, instead of living with it. Have you considered to consult a psychologist? I have done so and it really helped me to get through my depressive periods.
I keep on thinking about you,
Sending some strength over the Atlantic,
Willem
(Netherlands / Europe) -
June 22, 2012 at 3:46 pm
thanks so much for your response!! No offense taken at all – I will be the first to admit I am an anxious mess at times haha.. I will handle it really well sometimes, and then when I have a flare or worsening of my symptoms I question my diagnosis (thats’ where my anxiety starts- my first appointment the dr told me I may have ALS), and since i’m not a perfect fit for CIDP (i do have tongue atrophy).. I have this fear eating me away that it is some form of MND or soemthing less treatable than CIDP.. I think if my ncv showed CIDP then i’d rest easier!! I have thought about seeing a psych, but then I think ugh, thats more money haha.. and that is another stressor right now! I guess I also think they couldn’t really know what i’m going through since they haven’t gone through it themselves.. but i’m sur ethey could still help calm me.. and another issues is I am SOOO tired of seeing dr after dr for this!! It is hard for me to slow down with my career and young kids.. we are about to sell our house and downsize which once we do so will allow me a little more of a rest, which I desparately need!
Glad to hear i’m not the only one with burning viens! 🙂 -
June 22, 2012 at 6:51 pm
I am glad you are not offended. You are going through a hard stage of your life, having a chronic disease and now even being forced to sell your house. I am writing this with tears in my eyes.
Have you ever heard of the Kübler-Ross model for the mourning process? It is a simplified description of the complex process of mourning. It desribes five phases of mourning:
– denial
– protest / anger
– bargaining / negotiate / fight
– depression
– acceptanceOf course real life is not as simple as that, you may find yourself in the fifth fase on one day, falling back to the third phase the next day.
Have a look on the internet about this model, e.g. on wikipedia.
Perhaps it will help you a bit to understand what you are going through from the psychological point of view.
Have a nice weekend and take a good rest,Willem
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June 22, 2012 at 9:43 pm
I am sorry to hear you are not feeling well- I am not sure what your throat symptoms represent but perhaps you should see an ENT they could look at vocal cords rule out problem there like vocal cord spasm or weakness or other throat problem- just because you have CIDP does not mean you can’t get other unrelated conditions or other autoimmune issues- I also agree with the sentiment to REST- sometimes you just have to listen to your body and go with what it needs even if it means hardship for you or those around you – I have learned over 4 years that people are happy to help all you have to do is ask and it is ok to say you can’t do it all – trust me I have been where you are and have shed a lot of tears -now I just say sorry , I can’t do that right now or I am not at my best and ask for the help I need. When I did this I was able to start healing physically and mentally. Hang in there- you have my support.
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June 23, 2012 at 4:49 pm
It is scarey to be diagnosed with a disease like this. You are gong through extra stressful stuff and you do need some time for you to de-stress. Maybe 30 minutes an evening to read, to sit quietly, a nice walk (or as I do “a nice limping”) or something that is just for you. I know how difficult it is not to feel well. Do you have supportive people around you to talk to, to maybe take your kids for a few hours?? Go out with a special friend? Try journaling your frustrations? Going to a therapist maybe not be a bad idea. Or a church nurse/counselor. Remember to do something nice for you.
Keep coming to this forum to vent and we’ll do our best to offer support.
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June 24, 2012 at 1:20 pm
have not been on in a while, weren’t you thinking of another doc? If so, can you just go to Mayo and get it over with so that you can have a difinitive diagnosis? Regarding the depression comment, sincemoney and time are an issue regarding psych. would your doc prescribe something? Cymbalta would help with depression AND pain. Some people have great results with it, as well, it can go the other way, but maybe you can try. Weren’t you going to get another loading dose? Did that ever come to fruition? You have got to get a diagnosis. I remember our psych dx, then CMT (ms) dx, then gbs, finally cidp. That stressful time was bloody murder. Once we KNEW for sure what we had, the stress level decreased by more than half and we could focus on a treatment paln that worked with our symptoms.
About the vein issue, some people get that reaction from the ivig. A viscosity issue. Julie, another member had that issue and the itching as well. Those are a couple of the reasons she switched to sub q. She also reported that the sub q kept her feeling better from the cidp standpoint as well as reactions. Sub q might be a better alternative for you as well as you could do it yourself at home at the end of the day, with no side affects to follow. If the veins and itching are an issue, you have to figure something else out soon. At this point with an unconfirmed dx, it may be throwing a wrench into the pot. So maybe you could ask if you could get solumedrol in the iv before or after infussion to help with your reaction until you figure out this diagnosis issue. Good luck, keep us posted
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June 25, 2012 at 2:40 am
thank yall all so much for your kind words, i can’t tell yall how much it all means to me!!! Well, rest didn’t come easy this weekend.. we are now trying to get the house on the market within 2 weeks (while working full time crazy job, two little kids and Ivig, friend having a baby and a wedding ahhh).. I know I need to find time somehow to rest more! My Mom is selling her house in another state and will be moving closer once that happens, which will hoepfully just be nice to have someone else around! Most of my friends all have little ones and big families around, it’s hard since they just can’t even begin to understand and they are all involved in their own lives.. its impossible for someone to really understand all of this without knowing someone or going through it themselves i think.. but I understand that
I am better (not as freaked out the past 2 days).. spending time with my family and not working AS much really has helped.. it is REALLY REALLY odd- It’s like i have so many symptoms of myasthenia with my eyes drooping etc.. it was 100 degrees out today, i was out for about thirty minutes and felt like I couldn’t open my eye.. sure enough its like my face melted and my eye was halfway shut!! my husband noticed too.. i went inside in the AC and it went back to my now normal eyelid!!??!
But, then I have the numbness side of it.. i stood up for a long time last night and my foot has been completely numb for 24 hours now. i’m not sure if it’s a coniencidental nerve compressed by my shoes, or what?! My throat thing is a lot better.. (again a MG like symptom, when my hormones are a certain way my symptoms have a major flare)!! SOO wierd!
Dawn – yea, they actually said I could have an extra IVIG dose this coming week.. so I was planning on doing that.. however my work schedule I can’t change (which is a serious case of frustration for me right now).. and so I can’t do it this week.. If I did I would really run myself into the ground not having a second to recover from it… I am afraid I am about to be forced to make the time .. however if I can get the house on the market first, at least the financial stress will be a lot less (I never ever imagined we would have such a hit from my income.. we have always planned well, but couldn’t have predicted this.. i was a wreck last week when we made the decision to downsize out of this house.. but now I know it will help in so many ways- stresswise and into a 1 story smaller house to keep up with)… my biggest emotional hit was just that selling the house seemed like a admittance that this “thing” is slowly winning, i dno’t want to show any signs of “defeat” but i know it’s best just to plan for the worst, and hope for the best!! I will call my pcp and ask for a swallow study and then an ENT referral too (SOOO SICK of seeing dr’s!!!)
Dawn – I may check into that sub Q thing.. interesting that she got the rash like me to! They say the skin biopsy “sealed the deal” with my cidp diagnosis.. but I am just weary.. we are talking about going to mayo.. just trying to slowly make an ideal situation for this situation! :0!! Thank yall so much for yalls support! -
June 25, 2012 at 3:05 am
hi bny—sorry to hear of all the recent stuff you have going on. Heat, stress, anxiety, doing too much, all make me feel worse. I think you are right on the hormone thing too—i feel worse when it is close to the time for my period. I thought probably because this is already an inflammatory disease and then we tend to get more inflammation around that time of the month????
As for accepting it—-I’d have to say i have not accepted it yet either and my diagnosis was 3 years ago. I dont think i will even begin to accept it until i have run out of options to treat it. As long as there are options still available I still have hope to beat it and will keep that hope until i have tried everything that is available for me. so dont feel you have to settle for being this way or that cidp is winning. You are responding to the ivig which shows that it is something immune related. PLUS…the ivig has only been your first treatment. You have other options available if you need to resort to them. Lori -
June 25, 2012 at 12:15 pm
Just to add to the chorus, I too have a flare in my CIDP when I have my period- have no idea why! You have to be very careful about declining extra treatments due to work as only by controlling this disease will you protect your ability to work ( and do everything else)- I know it is easier said than done but it is the truth- Have you looked into your work disability policy? are you able to protect your job and income and cut back for awhile- CIDP is a legitimate diagnosis for going on temporary or partial disability provided you can swing it- I did this after struggling for about a year and a half – I am fortunate to have a good policy through work and a supportive workplace. I work part time now –
Right now I am struggling with a relapse as I have been trying to space out my infusions to every 2 weeks and this week will likely be needing and extra infusion- I don’t know where I will fit it in as that means 2 days in infusion and 2 days of side effects but I have no choice. I have learned that you have to stay on top of this disease- when you do that you can have a pretty normal life, but when the disease starts to get the upper hand it is a different story. Recognizing this is not giving up – Recruit your family, friends , co- workers, doctors dedicate to getting the upper hand and do what you need to do to rejuggle your life to allow you to get treatments, rest, self care, etc- this is your marathon – It is not easy but manageable. I agree with Lori – don’t settle! shell bones
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